MEMIOR DRAFT 1 For Conference

On 4/9/2008 4:08:42 PM

Note: It is really long.

Very DRAFT! I need to CUT, CUT, ADD…

Silenced Marathon

It Hit Me like a Speeding Bullet; It Changed My Life

By: Anne

March 9, 2008

Art of Expression

Memoir Draft

Silenced Marathon

Intro

For eighteen years in the hearing world in which I lived I thought “deaf” was the worst insult anyone could fling at me. When a doctor told me in the fall of my senior year of high school that I would become deaf at some point in my life, I responded, “yeah, maybe when I’m 80!” I never dreamed that six weeks later, I would lose the hearing that I had taken for granted all my life, and that it would change so much of how I related to other people and institutions.

Childhood

Growing up hearing in a comfortable suburban home in Atlanta, I did not know anyone who was deaf before high school. I said my first word when I was almost one year old, saying “mama” on Mother’s Day, right on schedule for a child with normal hearing. When I was almost two, my parents adopted my little brother. I loved to play with him when he was a baby. Before I started talking very much, I made a visual pun by holding my plastic tea pot cap on his head, giggled and said “cap” as I had noticed that the same sound was used for a hat and a top of a tea pot. Years later, I loved to sleep on the top bunk in my brother’s room on weekends, play card games like “war” or “go fish” late at night after my parents were asleep, and on summer nights climb out his bedroom window to sit on the porch roof listening to the crickets chirp. We had many sibling fights over the years, but I will always treasure those childhood memories.

Travels with family

My parents took my brother and me to experience all sorts of cultural, art, and historical museums and children events to teach us about other cultures around the world, history, and arts. Once when I was still a toddler they took us to the museum at Emory University. As my mom held me up to look at an ancient Egyptian mummy case, I started laughing and pointing back and forth, “mummy, Mommy, mummy, Mommy!” Over the years, I enjoyed occasionally going to the symphony, the ballet, or a Broadway musical on tour in Atlanta, and once going to Les Miserables in New York. We camped on Cumberland Island off the coast of Georgia, sailed along on the coast of Maine, and flew a seaplane over Puget Sound, and kayaked among sea otters in the San Juan Islands.

Mom

When I was four, my mom had to fly to Pennsylvania for major brain tumor surgery. Before she left, she gave me a sheet of pretty flower stickers, which I held on to with all my heart. I watched her airplane fly into the heavenly skies until it disappeared behind the clouds. The following day, I went to daddy’s office as he prepared to fly to Pittsburgh to join mom. I ran up to the 46^th floor window and peered into the sky past the horizon, and said, “Mommy’s in heaven.” Fortunately, she was home within a month, though she still has several side effects of that brain tumor.

Speech and hearing

Shortly after I started talking, I stopped talking for a long time, and then it was sounded unintelligible. My parents thought that my behaviors may have been due to emotional stress of the family situation and my mom’s surgery. Years passed as I stayed quiet; I didn’t talk much, so I started going to speech therapy every day after preschool. Mom enjoyed working with me on your speech therapy homework every night. When I got to first grade, my teachers decided that speech therapy was no longer needed. Dad asked if my hearing was okay, because sometimes our phone conversations were “cross questions and crooked answers,” leading him to wonder. That was due to me watching and learning behaviors, like switching ears while talking to my grandparents on the phone.

Speech, hearing, and ballet

When I was in first grade, I faked out the hearing screening tests despite being essentially deaf in one ear, and I got a perfect score on a balance test with one balance nerve completely non-functional. At that age, I also started ballet at a local dance school. When my teacher asked all the little girls to hop on one foot, I was the only ballerina who could not. I could have had taken off the pink leotard and tutu that day, and given up, but instead I went home, and practiced for hours and hours, until I was hopping single-footed laps around the house.

Faith

My Christian faith has always been a strong influence on my life. Every week growing up, I’d go with my family to our large Presbyterian church. With many of my friends, I went to Sunday school and participated in fellowship activities. Every summer it was time for youth camps, Vacation Bible School, and eventually I worked as a counselor at my church’s camp for high school students. Nearly every Wednesday night of my childhood I attended choir, even though for years after discovering I was deaf in one ear. Since I didn’t carry a tune very well, one year I got to be Mary in the big Christmas pageant.

Family

I loved being with my extended family several times, each year. Every summer, my aunts, uncles, cousins, parents, and grandparents, stayed together in a big beach house in South Carolina for a week. With five boys plus me as the only girl, I took part in a lot of “boy games”. We golfed, rode bikes and boogy-boards, and played ball. I think that sometimes they viewed me differently, not because of my hearing, but since I was the only girl, but I never did like to play with dolls. I remember every Christmas, the extended family gathered again at the grandparent’s house where we had great fun sleeping on pallets in our grandfather’s upstairs study. If South Carolina happened to get an inch of snow, we had great fun making snowmen, snow-angels, and snow ball fights.

1996 surgery

The summer after second grade, in the middle of the Atlanta Olympics I came down to breakfast one morning with one side of my face paralyzed. Within ten days my parents had me on a plane to California for surgery to remove a tumor on the auditory nerve of the ear in which I had lost hearing. While I was very scared, the surgery had a great outcome, and I woke up grinning from ear to ear. With the medications and lack of activity, I gained a lot of weight that summer. I tried to cover the cut off hair with a bandana, which was certainly not considered to be “in.” When I returned to school to start third grade, I had a tough time. There was a mean black girl and her childish gang on the playground; she harassed me every day and called me “pregnant.” My friends from Brownies Girl Scouts didn’t know what to do at that young age, and stopped sticking up for me. I wanted to hit her, but I knew that was not right; I ran away and cried.

School…. (Continued from above section- tense changed)

I am only nine years old, and those mean little girls said I am pregnant! I am a child. I am not pregnant! My friends have left me; they walked away. I will wait until I get on the yellow bus, and get home, before I cry; I am a big girl; I am strong.

Due to the horrible time I had fitting in at school after that surgery, I went through a lot of changes in my schooling. I went from a very diverse neighborhood public elementary school that I had loved and where I had had lots of friends in Brownies, to a private Episcopal school. The church school had very strict rules and would make no accommodations for kids with ADHD, with which by then I had been diagnosed. Most of the girls here have been together since preschool and were extremely cliquish and mean.

Middle school (present tense)

At school, I pretend I like the Spice Girls; when I go to sleep at night, I put my Mozart tape into the cassette player. I am told this school is a fresh start, so I do anything I can to try to earn friends, but I struggle. I remember the girls were playing “House” in the parking lot during recess, when I asked to join, they agreed, “Anne, you can be the maid. I am the princess, so you do what I say. Move those leaves!” Every Friday we have chapel, the best part of the week. My favorite part is singing “Amazing Grace, how sweet the sound, that saved a wretch like me, I once was lost, but now I’m found….” I like the way that everyone starts singing louder when we reach the second verse.

After that I went to a Quaker school that was long commute across metro Atlanta but which was a very warm, accepting environment. In seventh and eighth grades, I went to a tiny school for children with learning differences. It was in a grand old mansion, and our playing field was across in the street in a park designed by Frederick Law Olmstead who also designed Central Park. With just eight kids in my grade, I learned some useful learning skills but socially it was rough. With changing schools so much, I interacted with a large variety of children.

In middle school, I became an entrepreneur, as I distributed babysitting business cards through all the surrounding neighborhoods. As a Girl Scout, I had to sell more cookies than anyone. Later, as a teenager with a strong work ethic, I could always find a job somewhere through sheer grit and determination before becoming deaf, but afterward found such efforts bitterly frustrating.

HS

After all of that, I decided to go to a public high school with magnet programs in arts and sciences and extremely diverse international student body. This had me involved in a tremendous journey. I was a chubby little girl, but when I got to high school, I went out for cross country, lost every ounce of “baby fat,” and through pure determination and diligence transformed myself into a dedicated athlete, lettered in three varsity sports and ultimately became a marathon runner.

Friends

I always wanted to be accepted by friends, and for that to happen, I thought I need to be like them. Only my closest friends knew that I was deaf in one ear. The only I saw no need to let other people know. Hearing loss of any sort is invisible, and I wanted to keep it that way.

Deafness

As a child, I didn’t understand anything about deaf people, deafness, or the culture. Since I was a little kid, my best friend’s grandmother had some degree of hearing loss, and then my elderly next door neighbor also began to loose her hearing at some point. Both of these women were wonderful ladies. I noticed that I always needed to talk louder, practically yelling, when I talked to them. I didn’t have any close friends my age with hearing loss. Anyways, when I was seven years old, I learned that I was totally deaf in one ear, but that never really stopped me from doing anything. If a person called my name from far away, I sometimes looked around, unsure of which direction the sound came from. In the classroom or with a group of friends, I always made sure I sat on the right side of the group, to listen better, but it was not a problem. As a child, I thought that I was a little different, but that generally, some old people loose hearing and become deaf. When I got to high school, I became friends with Rachel, in my English class, who was deaf. She had a cochlear implant, spoke well, and did not use sign language. Most of the students knew this, but did not view her differently. She knew that I was deaf in one ear, so we had something in common.

2005 – Doctor, stress, back at school, XC, and then surgeries

When I began my senior year of high school, it was my last season of running on the high school cross country team. While my friends were working in classes, and waiting for college acceptance letters, I was facing a different ordeal that changed my life, relationships, schools, culture, perspectives of people, and ways of communication.

It was a chilly day in October 2005, when I flew to Boston with my parents. The doctor at Harvard’s Neurofibromatosis Clinic told me that I might become deaf at some point in my life. I thought that might happen when I was forty or fifty. I soon learned that I was wrong, and that it was happening much faster than I had ever expected. Those thoughts scared me more than anything, and it was a very emotionally hard time for me.

After doctor visit (present tense)

The doctor’s old golden retriever, a retired rescue dog, is in the office. Like a little child, I walk over and pet Madison’s soft coat, as if she could make my awful reality disappear. I am feeling sick, confused, mad, and betrayed. I have been punched in the guts of my stomach. I think the doctor is crazy. Somehow, I have the knowledge to realize that even a friendly dog, cookies, or ice cream couldn’t ever take away the truth. My parents and I go to the airport, and board a plane to Atlanta. I am sitting in my seat on the plane, and the engine is loud. I don’t want to make a scene in front of all those strangers, plus I was really upset, so I wrote notes back and forth to my dad, who was sitting across the aisle from me, on my right. My mom is sitting next to him, asleep. As I remember, the conversation went something like this:

Me: “I hate you. … My life sucks! … That doctor is crazy and wrong! … How would you feel if your doctor told you that? I’m not going to be deaf!”

Dad: “I’m sorry you feel that way. I understand that you are upset. I am too. I think that you will be okay. They could fix it with stem-cell research, if that happen in ten years.”

Me: “I hate you! … You knew this would happen! Why did you never tell me? You knew I’d become deaf! She said I’m going to be deaf! What the fuck? When?”

Dad: “Watch your language, kiddo. I knew that it was a possibility, but we didn’t talk about it, because we didn’t want it to hold you back from accomplishing your dreams. I don’t know if that will happen or when. Maybe it will be years from now, after college, and you have family, or when you are an old lady. You might want to go to the bathroom to wipe your tears and try to calm down.”

Me: “What if you were deaf? I think you would loose your job! How would you feel?”

Dad: “I would be very sad.” …..

Me: “I still hate you!”….

I feel very angry, but I don’t know what to do, so I leave my seat to go sit in the back, and then in the plane’s tiny bathroom, crying my eyes out. I’m so upset, that I throw up into the airplane toilet. My heart hurts deep inside of me, but I move on.

I go back to school on Monday, still thinking about what the doctor told me. I try to keep my thoughts and emotions hidden as deep as I can. I usually wait until I get home from school, to cry, because I don’t want my friends to see me cry. I have a hard time focusing in my classes. Today, I can’t hold it back at my cross country meet. I just ran as hard as I could, but I fell down twice; I am upset, not about the race, but about my life. There is blood down to my sock, as I limp a little into the edge of the woods, just a few yards away from my team, find a stump, sit down and cry. My shins hurt and my back aches, like I’ve been stabbed by a thousand needles. I use ibuprofen because it helps a little with pain, but I am hurt; my heart bleeds, as I run. I feel like nobody could possibly understand what I was going through. I feel lonely because it is rare that anybody knows about Neurofibromatosis Type II (NF2), a rare genetic disorder, affecting about 1 in 40,000 births. It causes benign tumors on the spinal cord and auditory nerves.

December 2005

Later the doctors gave me a steroid medication in hopes saving my hearing. I returned to Boston to have surgery to remove the three tumors on my spinal cord that had been altering my running gait, causing a lot of physical and emotional pain during the last cross country season. Thanks to God, that was successful and I can still run! I soon flew to California for yet another surgery. I had three surgeries that December and spent Christmas in a hospital room in Los Angeles where I could see the famous Hollywood sign from my window. The surgeon did operation to decompress the auditory neuroma tumor of the eighth cranial nerve on the left side, which was caused by my rare genetic disorder, Neurofibromatosis Type 2 (NF2). That surgery did not help.

Post-op

I was in a complete state of denial, honestly, because I was not ready to accept such sudden and drastic change to my life. I viewed myself as hearing, not deaf, all of my life. I didn’t see that there could be anything in between. Just hearing and deaf. I could still hear a lot of sounds at that point, so I knew that meant I was not deaf, so I figured I was hearing, even though I could not understand speech. I probably had tinnitus, which is a roaring sound in the ears. I didn’t know anything about deaf people, culture, or sign language. Suddenly, all communication had to be written. It was a strange transitional time for me. The only required course remaining for high school graduation was a one quarter economics class, which I took with the help of a captionist who sat next to me with a laptop computer. I had stopped talking on the phone, even though I could hear it ring; I began taking an American Sign Language class at a community college while I was still in high school, but I really was not emotionally ready for that. I drove to deaf gatherings and introduced myself at a meeting of the Association of Late Deafened Adults at the Jimmy Carter Presidential Center.

Reality begins to sink in. I spend a lot more time alone, now. I don’t know how to communicate with people that I love, so I pretty much take our dog, Daisy, running, hang out with the dog, and even talk to the dog. There are no communication problems between me and my dog; she loves me and I love her. If people do try to talk to me, it goes something like this:

Person: keda ga fhd ponydsfhsd fninja df alsch eu n cfsd sdf dsnf dnso I arfy!

Me: Hi. How are you?

Person: si dfjsn fdkf w f fnsdsf ds hbty ferers sndf ssoh dufhss wee fdf she hs deav

Me: What?

Person: “nevarming”

Me: ***What happened?? Doesn’t know what to do so leaves.***

They are my friends, but they don’t know that “never mind”, “It doesn’t matter.”, “I’ll tell you later,” is so frustrating. I want to know! They talk too fast for me to understand anything they say, but I could understand that fine, a just a few months ago. I remember having some suicidal thoughts, but I never had the courage to attempt anything serious. What happened to me? Who am I? What have I become? Why can’t I understand what they are saying to me?

Maryville – 2006-2007

That next fall, it was time for me to leave home and start college. I had been accepted to my first choice, Maryville College, a small Presbyterian college located in the foothills of the Smoky Mountains in eastern Tennessee. The school offered sign language classes, which I took. Even before I lost hearing, my parents had thought this would be a good choice for me since they knew there was chance for me to become deaf at some point in my life, but hoped medicine would advance before that happened. They had never imagined I’d be deaf before I finished high school. They thought I could go there and learn sign language while in a normal college setting, just in case I ever did become deaf. However, before I got to Maryville my ability to understand speech had been lost. I took the first class in ASL, but no one really wanted to practice it out of class so I didn’t progress very fast. I had typed transcriptions on a laptop in my other classes so that I could follow along what was said.

Maryville would have been an ideal small liberal arts college for me if I were still hearing. I made a lot of friends even though communication was difficult, volunteered at a church across the street, and ran on the Division III NCAA Women’s Cross Country Team. But at some point, I realized that I really was deaf, and then learned that I needed to have surgery again in April because that same tumor had grown more. I went on, and tried to not think about that, but I thought about it constantly. I knew that when I woke up, I would hear no sounds, but I didn’t really know what that would be like. At the same time that I had that tumor removed, I also was able to receive an Auditory Brainstem Implant (ABI). It is similar in concept to the cochlear implant, but works differently. The ABI helps me with lip-reading sometimes.

RIT/NTID

I research and found out about RIT/NTID. This is when I learned, through friends in a Facebook group, about RIT, NTID, and the large deaf population at Rochester. Having lived all my life in the deep South, wearing flip flops to school most of the winter and seldom seeing a snowflake, I thought I would freeze moving to New York. I talked to my parents about it, and we all came to visit during my spring break. I saw hands flying everywhere, and only understood a few words of it because I still had learned very little ASL, but for some reason it seemed right. I met up with some friends I had met though a Facebook group, met more cool people, and visited the deaf Bible study which was amazing.

March – April 2007 (past talk)

The end of March and beginning of April last spring was a dramatic transition time. After visiting RIT, I returned to Atlanta to run the ING Georgia Marathon, my first full marathon, with the Children’s Tumor Foundation NF Marathon Team. Five girls from my Bible study group at Maryville drove down from Tennessee to cheer me along the route and joined my family for lunch afterward. I returned to Maryville for just a couple of days after the marathon to pack up my stuff and move out of the dormitory before flying to Los Angeles for surgery to remove that tumor and get my Auditory Brainstem Implant.

April – May 2007 (switched to present talk)

Today is April 2, 2007. I am on a plane with my parents to fly to Los Angeles, California. Tonight we are going to Santa Monica Pier; hang out, go run, and to get dinner. Tomorrow morning, I will check in to House Ear Institute, because I have to get a lot of tests, EKG, blood work, even another hearing test.

The day I became fully deaf

Today is April 4^th. I glance at my Timex watch; it says 5:00AM. I ran my first marathon just ten days ago, but now I am told I will not be allowed to run until the middle of May. I am going to the hospital to have surgery today. I am thirsty, but I am not allowed to eat or drink anything now. I am scared, but I act as grown up and courageous as I can.

It is just another surgery, just another dang tumor, I think to myself. I am rushed early in the morning, as I hear the sounds around me. The sounds sink in. I remember how things sounded before last fall, and I know how they sound now. When we sit in the waiting room, a lady walks up to me and she directs me to a desk. She holds a stack of papers, and then points to where I need to sign. I sign my full name on the line below the long paper, which I don’t bother to read. I already know that it is about the surgery and that I could die. The woman gives me a plastic bracelet with my name and numbers printed on it, while she continues to talks to my parents, as I sit, fumble, and watch my surroundings. Dad writes notes to me; he tells me to not be scared. Soon I am lying in the operating room. I am still scared, as I grasp my mom’s hand for comfort; I remain calm. She lets go, after the surgeon shaves half of my hair off. He gives me a shot; I fall asleep.

Many hours later, I wake up. My head hurts; white gauzy bandage that looks like a large turban is wrapped really tight around my head. I hear sound, but I soon realize those sounds are not real. The sound is silence; now I know what silence sounds like. Tomorrow I will move from ICU to my own room, and eat hospital food, not just lemon-flavored sugar free Jell-O. I hate Jell-O!

I continue to improve. I am mad when I see the sign outside my door; one says “FALL PRECAUSTIONS” and the other “HEARING IMPAIRED.” I start walking around the hallways, two days before the rehab person brings a walker to my door, which I refuse to use. I am a marathon runner, so I will not touch that walker; I am deaf, but I am strong; I am independent, always independent, just like the “Miss Independent” award I got when I was in pre-school.

Back home – April- May

Two weeks later, I am back at home in Atlanta. A few days ago, my doctors said that I am recovering so well, that I can go home earlier than we had expected, so my dad changed the flight tickets. Now, I am at home. I feel sad; I wonder, “Why am I deaf?” I lie on my bed, and then go downstairs, where I sleep, watch television, text message, and daydream, all day. As soon as I am allowed to drive, I go to visit my friends at Maryville College. The run over and hug me so tight, it is like they want to brake my ribs! I am very happy to see my friends. They ask silly questions like if I can hear anything. I am eager to run, but I am told to wait. I take the dog for a walk, and by next week these dog walks have greatly increased length. I spent all day walking down to my old high school and back home. I am surrounded by sounds, but I hear silence. When I see people talk, there is only the sound of silence. This is my life, a silenced marathon.

It is the beginning of May 2007, and my long walks turned to walking then jog a little. It does not hurt; it feels good, so I keep going. Within a few days, I get in trouble, because I am not allowed to run. My dad looks angry, as he quickly scribbles notes to me.

Dad: Were you running?

Me: (shakes head, no)

Dad: Jogging? Why is your shirt wet?

Me: It is hot outside.

Dad: If you run, before your doctor says you can, you could displace the electrodes in your implant. You MUST let it heal! If you ruin it, they cannot fix it! You will NEVER hear anything! You may have already caused a LOT of damage. Do you understand?

I am angry. I probably slammed the door, a silent slam to me. I excuse myself to the bathroom; I cry, silently. I know I jogged a little but I didn’t know it could harm the ABI. I wonder why he did not tell me that. Inside of me, I am scared. I am told I could have ruined my implant. My dad found out, and now I am in trouble. I have to wait two weeks before I am allowed to run; I have to wait two months before I know if jogging a few miles ruined my implant.

At the end of May, I get together with a small group of college students that I talked to online. All of us have NF2, so we decide to meet up in New York City to hangout for a few days. We explore the city, go to the beach, and talk about our remarkably similar experiences with surgeries and deafness. We have a big birthday cake for me, Jessica, and Christine, as all of our birthdays were that week.

ABI activated- June

Today is June 6^th, the day after my 20^th birthday. I flew back to California yesterday, and now I am sitting in a waiting room with my mom. We are eager to see if and how my implant will work. Little butterflies flutter in my stomach. I am nervous, scared, maybe excited. I get hooked up and I hear strange sounds. Whoa, that is loud! Loud, quiet, high pitch, low pitch, all of the sounds are different, all ten of them. I hear my audiologist and my mom speak.

Audiologist: “1, 2, 3, 4, 5, 6, 7, 8, 9, 10, baseball, hotdog, airplane.”

Mom: “Hi, sweetie. Can you hear me?”

Me: “Um, you sound like a…. a…. a…. dying cow and sick frog!”

Mom laughs; she looks a bit horrified, and the audiologist explains that it will take time for me to get use to it. I immediately think that I will not use it. It sounds so strange, but later I end up wearing a lot. Now, I just want to get the smaller processor. I still cannot understand everything, but it helps some.

Summer 2007: camp, summer school, learning sounds, deafness

It has been week since I got my implant turned on, I will now go to be a counselor at my church’s summer camp for high school students. This is my sixth year of camp, second year being a counselor. I fear communication problems, but I know I will have fun. I found a notebook that I and friends wrote in at camp, last summer. Reading it takes me down memory lane. There are notes from friends who went the extra mile to write summary of what the speaker was talking about, written chit chat between me and friends during the evening group gatherings, there are letters, messages that I wrote to a friend when I talked too quietly or when the noise was too loud, and there are doodles that I sketched when I had no clue what the speaker was talking about.

June 16, 2007

Dear God,

Sometimes I want to think that I am strong, but really I know that you are strong and I am weak. Please Lord; help me to hear your voice calling to me, and to recognize it, even though communication with others can be difficult. I got this new ABI turned on just a little over a week ago, because now I am deaf. Maybe I need your help with accepting that reality? Or have I already? I am not sure. Anyways, when I turn on my ABI, I can hear sounds, and maybe I will be able to understand more than in the silence. Perhaps, can I better hear your words without it? I want to hear my friends too. If many are talking, the sounds are much more confusing. Where should I go in life? Please listen and call to me; help me to hear you! Allow me to use courage.

- Me

My friend, Alex: “My grandmother has a hearing aid that looks a lot like yours.” I explain to her that my Auditory Brainstem Implant works very differently than her grand mom’s hearing aid. I told her that I can hear sounds with my implant, but it is hard for me to understand the sounds.

I have many awesome friends, and some go the extra mile to write notes like they would for classes, but for a counselor meeting, evening speaker’s story, or what song we are singing. I wanted to follow along, be in the know; my friends help me a lot. I realized I could understand speech if the person is patient, but my friends found it easier to write notes. I noticed that the speaker was one of those people that did not move his lips much, says it all through a toothy grin, so I understood very little of it.

“It is like learning to ride a bike. I need to practice, or I can’t improve.” – Me

Chit Chat by written notes and a flashlight, while sitting around bonfire with all of the campers:

Me: Sometimes I go to church, and just sit there. It is frustrating when I cannot understand what they are talking about.

Ju-Rue: Yeah, I’m sure that it is very hard. By this time next year, you will be able to hear right?

Me: I can hear him talking with ABI, but it is hard to understand.

Ju-Rue: Yeah so will you be able to understand more in the next year as they turn the volume up.

Me: maybe. I don’t know. Yeah, practice makes things improve. It does not make me have normal hearing, though.

Ju-Rue: Right- so if you practice reading lips and trying to hear then eventually you’ll be able to understand?

Me: Where do you go to school? (I want to change the subject)

Okay, of course I have hope that it will improve; I would not wear it if I did not think that. I am finding this conversation so frustrating, because she was drilling me for facts about my future. I don’t know what is going to happen. I live in the present, not the past, not the future.

Two days later, I am sitting next to Caroline at Vespers. We write notes back and forth. I have known her since we ran cross country together when I was a high school freshman and she was a senior. That was almost five years ago.

Caroline: How has your time been this week with your cabin?

Me: I have problem with talking at right volume! Ha-ha. I’m in lodge with MB and the senior girls. They are nice.

Caroline: That is good. I have been bragging to people about you! During cross country (my first year) you could hardly run a mile and now you are running marathons. You have so much strength. You can do anything you put your mind to.

College

I decided to transfer to RIT, and went to a summer immersion program in ASL at Gallaudet. Since coming here in the fall, I have made a lot of friends, improved my signing, and learned more than I had ever imagined. My time here thus far, has helped me to change for the better, and also to help me accept myself for whom I really am now. Of course, I sometimes find that hearing people assume I’m hearing because I talk well, while deaf people assume I’m hearing because signing is clearly a second language for me.

Atlanta

Going home to Atlanta is interesting. I still have friends that I have known for a long time who are hearing. Some friends that I don’t talk to me now, but others will really remain best friends forever. I think that some of my hearing friends from before I became deaf view me the same, but many felt sorry for me. I don’t like that kind of over-done sympathy. It is often difficult to communicate with these hearing friends, but if we are really friends, we will find a way. I often get together with Emily, who has been my best friend since Brownies and who is now the stereotypical University of Alabama sorority girl. We go shopping at the same old places we used to go, go run around the park, or sometimes try to find a captioned movie at a theatre. Emily likes to send me text messages like “What? You ran in 20 degrees? You are crazy! If I went to school there, I’d have no motivation to go to class, because it is too cold!” She really just talks about me being crazy and stuff about the weather! I recently emailed Emily to ask a few questions about our friendship and about me becoming deaf.

“When I first met you I did not know that you had hearing or speech problems because I think that we were so young, but even if I had noticed it would not have mattered to me, we are friends either way.
When I found out that you were deaf in one ear, it did not change anything except the fact that I had to sit on the left side of the car when we went places!
When you told me that you may become deaf later in life, it shocked me and I think that you too because it was so surreal! You had known that that was a possibility but when it happened so quick senior year I think it hit you like a speeding bullet. But you adjusted; you have done everything and more to accommodate, even transferring schools! I think that you are so happy at RIT and you have made so many new friends and have learned so much and you have been so independent and have had the support of so many, and if people have not supported you or have not tried to understand, then those are not the people that you want or need to have around you. I also think your faith in the lord has helped you to be so strong also.”

See, that’s why I love my friends! I got joy tears and I laughter when I read that.

Atlanta- Church

It is tough when I go home because I want to attend my church where I grew up and have many hearing friends. However, even with 10,000 members the church has never had a sign language interpreter, or captioning on its TV broadcasts, or any deaf ministry. I am apparently the only deaf member so there is no demand for interpreters, but my dad has been pushing the ministers to do something. After Christmas, the senior minister sent dad an email saying he was embarrassed that they had done nothing for deaf people, and would at least start providing an interpreter at one service on each big holiday. It’s a start.

Friends

My friends, both deaf and hearing, often send me text messages, so that works well. I made a lot of wonderful deaf friends who have been very supportive of this, and have also helped me to learn a lot more sign language. Sure, sometimes I miss hearing guys, because there are things that I cannot do in sign language, like talk while I hug him, or whisper into his ear. But, then I realized that it is not all bad. I don’t know, but it seems like deaf guys appreciate girls more; deaf guys can be more romantic.

Music / ABI

As I work on editing this memoir, I have on my implant now, with my iPod plugged into it. I can hear sounds; people call this music. It does not sound like the music back when. It is fast beats, and people call this techno. I can agree it does sound like techno, hard to describe, very digital sounding. Now, “beep… beep… beep…” (Music continues) “….beep…beep” … silence. My batteries just died again, so now I hear silence. Do you remember what I silence sounds like?

This is a collage that I made last year. The same title stuck for both!

…..

Death

I did this when working on my paper, but I might not use it in my final paper. It is hard to make it related, because it seems random.

When I think about my past, I remember deaths. Pain is death, and death is like pain. My past had had painful times, so I try shoving it all behind me; live in the present. I remember fun times too, lots of fun time, but I remember the details of it all: death, death, death. Death is like sleeping, but they don’t wake up, because they are dead. People die, because it is part of life. The person turns cold, and put in the ground with flowers around them. People fear death.

Live like I will die tomorrow; Dream like you will live forever.

I remember June 4^th, 1999. I am eleven years old, but I will be twelve tomorrow. I am with my friends at Gymnastics America. My mom will come pick me up soon. My mom gives me a big hug when she sees me. She says “I love you.” I know that, but she says it many times, because she wants me to always know that she loves me. Mom tells me that Destin got hit by a truck. My parents got our dog, Destin, four years before I was born. She survived the hit, but she is in so much pain, she will be put to sleep. Mom takes me to see her for the last time; I am afraid to see her in so much pain, but she has been in pain for years. I pet her soft golden yellow and white hair. I hug her tight and give her a soft kiss; I wish she could stay alive but it is time for her to go. In dog years, she is older than any of my grandparents. I leave the room, before the vet will give her a shot and she will die. The following day I go to my grandmother’s house, where I watched the movie All Dogs Go to Heaven 2.

I just started eighth grade. Next year I will go to high school. Today is September 11, 2001. My teacher tells the class that something bad happened, but she won’t explain. Then I found out that a plane had hit the World Trade Center, in New York. That was the first time I feared death in my family, because I immediately realized that my awesome aunt worked near there. My aunt was fine, but thousands of innocent people died today. I watched it on the news at home. Ken was too young to comprehend what had happened. We watched the replay of the plane crashing into the buildings, and people jumping out of the building, to death. Ken laughed; I’m not sure why, but perhaps he thought it was so surreal that it was more like watching things get blown up in video games. For the next few years, America went through drastic changes, war, and security became as tight like the invisible ropes that I felt yanking on my body, years later.

I remember July 6^th 2003. I just went for a run in the warm dark summer evening. My mom tells me to call Emily back. It is later than I would normally be allowed to call her, but this was an exception. I soon find out that a good friend since pre-school was killed in an 18-car-pile-up, caused by a drunk truck driver. My heart falls into a million pieces, once again. I saw Katherine just two days earlier at the Peachtree Road Race and then the neighborhood pull party. It is like a nightmare, but I can’t wake up from it, because this is reality. Katherine was fifteen years old, always had a smile on her face, always cheerful. People say that she made the sun shine when the rain fell. I still don’t understand why she had to die.