I Have Heard the Wind
I Have Heard the Wind
by Torrie J. Bryant
Torrie is a 22-year-old college student. She is majoring in Print Journalism, with a minor in women’s studies. She is a bibliophile, loves to write, surf the ‘Net, ride her bike, ski, and watch Jeopardy! She is a radical feminist as well as a radical Deaf and Disability Rights advocate.
On my bed sits a stuffed raccoon named Elmo. My best friend from YMCA camp gave Elmo to me the summer I was sixteen. That was the summer before I had reconstructive surgery on my left ear.
As a result of being born with a chromosomal abnormality known as 18q- syndrome, which caused my ear canals and inner ears to not form properly, I had a moderate low frequency loss in both my ears. I’d worn bilateral hearing aids from the time I was 3 and hated wearing them because it seemed like I was the only person in the world who had to wear hearing aids. (I never could understand sitcom plots where the Big Problem was that the lead kid was going to get…. OH NO! GLASSES! Everyone in the world wore glasses but I was the ONLY one who had to wear hearing aids) I also hated the fact that as a result of low frequency loss, my voice was rather high pitched. I couldn’t hear it but of course kids made fun of my voice. I’d been told that when I got older there might be a possibility of having surgery to widen my ear canals so I wouldn’t have to wear hearing aids.
When I was a sophomore in high school my mom made an appointment at Mass. Eye and Ear up in Boston for me to be checked out to see if I could have surgery. After about a million tests, CAT scans, and other lovely time-consuming medical procedures that stretched out over the course of four appointments, Dr. Eavy told me to come in for a final appointment. “Blah, blah, blah…” I wasn’t really listening to what he was saying because I was so nervous about whether he’d proclaim me a good candidate for surgery or not.
“So do you want to go through with the surgery?”
My heart stood still and inwardly I yelped with excitement. Outwardly though I remained calm as I managed to just squeak out a “Yes!”.
Dr. Eavy continued “Well that’s good. You seem very eager to have this done. I must remind you though that this surgery although not risky, is very iffy since we don’t know that much about the surgery because pathology like yours is so rare, so it really hasn’t been performed on that many people. It might work. You might be able to get rid of your hearing aids for good; you might go profoundly deaf. We just don’t know. However the best results are achieved when the outer ear is normal, like yours. We really don’t know but I would say that you have a pretty good chance of the operation being a success.” He looked at his watch. “Well I must be going now. I have to give a lecture at MGH. I’ll see you in September.”
School ended and summer started. For me summer meant that I’d be returning to Camp Nokomis (and I was returning for a month!) a mainstream YMCA camp located on Bear Island in Lake Winnipesaki in New Hampshire. However that was still a month off, so during that time I slept late, went up to Maine with my friend Meaghan, swam a lot, hung out with friends and crossed off the days to the 1st day of camp on my calendar. Outwardly that summer I was extremely excited but inside I was scared. Some of it was just plain old pre-op apprehension. Most of it however was fear that the operation wouldn’t work. That was a legitimate fear, because in 8th grade I’d gone up to Boston to find out if I was a candidate for surgery. I’d gotten my hopes up prematurely and had my heart set on having the operation but it didn’t work out and I’d been very disappointed to say the least.
That summer when I finally got to camp I was acting all excited about my surgery. Everyone thought I couldn’t wait to leave camp, and have the surgery. Far from it. I loved camp, and I was always joking with my counselors that they’d have to drag me kicking and screaming away from the camp. That summer was no exception. However for some reason I wasn’t as excited to be there as I’d been in previous years. Was it someone who’d been there in previous years that wasn’t there this year? No, most of my camp friends were still there. That wasn’t it. Was it the activities? No, I was taking all these fun activities with really cool counselors. I finally decided to go talk to someone. I went to go talk to my best friend, Maureen who was a CIT there. During Free Swim, I walked over to Cabin 10, which was her cabin and knocked on the door. “Come in ” came Maureen’s voice. I pushed open the door and went in. Maureen looked up from where she was lying sprawled on her bed doing some paperwork.
” Hey Torrie! What ‘re you doing here?”
” Mo?….Maureen? Can I please talk to you?”
My voice must have sounded shaky because she looked concerned. “Certainly, honey. That’s what I’m here for. Sit down here.”
Maureen sat up and moved the paperwork to a table next to her bed, and made room for me. “What’s up honey? Is something bothering you?” I nodded. She put her hand reassuringly on my shoulder. “What is it? You can tell me.”
I paused for a minute, “Well…. I’m…I’m…. I’m scared about my surgery!” My lower lip quivered and I started to cry.
“It’s OK sweetie. It’s gonna be all right. I’ll pray for you. I have a good feeling about this.” Maureen embraced me. “What exactly is scaring you? I thought you were EXCITED about this!?”
” I am…. I mean I’ve been waiting a while for this but well…” I paused for a minute because a lump had come up in my throat. ” Well…. Do you remember my first year here, and how I was kind of a crybaby then? ”
Mo nodded so I went on. “Well I was like that because I’d been disappointed. My parents had told me that they’d found a doctor who might be able to perform the surgery and I got my hopes up and let’s just say I was sorely disappointed. Also…. also my doctor said that they don’t know what to expect in terms of success. They’ve only performed this operation on a few people…and I’m scared of that. I don’t know what to expect. I’m not scared of the actual operation. I’ve had two operations before, on my foot and if this one had a good track record I’d be counting down the days till camp ended, but it doesn’t even HAVE a track record, and I’m scared I’ll be disappointed again!” I started crying again.
“Shh. It’s OK honey. As I said I’ll pray for you. I wish I knew how you felt but my only experience with hospitals is when I was little and I cut myself and it wouldn’t stop bleeding.”
I interrupted her “Boy you’re lucky. I’ve been up to Boston to see specialists more times then I can count.”
She laughed and continued ” Think of yourself as a pioneer. Think about it. I mean heart transplants were wicked rare even when we were little, and now they’re performed all the time. It’s gonna be OK. I’ve got a good feeling about this.”
“You do?” Maureen nodded.
“I guess you’re right.” I managed to smile. “Thanks Maureen, I love you! You’re the best friend I ever had!” ” I love you too. Are you OK, now?” I nodded and flashed a smile. “Good. I have to finish this paperwork. If anything’s ever bothering you, just come and talk to me or talk to Julie or Marissia (my counselors that year) OK?”
Maureen gave me a hug and I left. Camp went by all too quickly, as it always did. The days before it ended were filled with trips to the maildock, swimming, canoeing in the rain, dances, archery, water-skiing, soccer tourneys, riflery and lots of other fun stuff. Two days before I left camp , during soccer class (which Mo co- taught) Maureen asked me to come to her cabin, during Free Swim.
“Why?” I asked.
My curiosity was aroused, so I went to her cabin at the appointed time.
“Here Torrie. This is for you.” She gave me a stuffed raccoon from the camp store.
“What’s this for?”
“Well I thought you might like to bring it into the OR with you, so I can sort of be there for you. I’d love to come down to be with you, as I know you’re very scared but, as you know I’ve got school that day and I don’t think my parents would let me drive that far.”
My eyes filled with tears and I wordlessly embraced Maureen. After a few minutes I managed to find my voice, “Maureen you’re such a sweetie. Thank you! I love you! I can’t tell you enough how much this means to me!”
“I love you too, and trust me it’s gonna be OK. You’ll have …What are you going to name your raccoon?”
I thought for a second then it hit me. “I’m going to name it Elmo, after you.” This was a play on her name in 2 ways. Firstly it was the name of the extra player in soccer class .The soccer class I’d been in that session had an uneven number of girls so Mo and the other teacher, Alex were an extra player dubbed Elmo. Secondly Mo’s middle name was Elizabeth.
“Oh Torrie!” Maureen started to cry because she was so touched.
“Hey!” A familiar voice interrupted our hug. It was our friend Erica who was also a CIT and who’d stopped by to talk to Maureen about something.
“Torrie… Maureen…Why are you two crying? It’s too early to get sad. There’s still two whole days left of camp!!”
Maureen and I were both famous for our public displays of tears at the end of camp. Last summer Maureen ‘d been the first one to burst into tears in the dining hall. I had promptly followed. Maureen and I looked at each other and cracked up. When I’d calmed down I told Erica about what Maureen’d done.Maureen and I were both famous for our public displays of tears at the end of camp. Last summer Maureen ‘d been the first one to burst into tears in the dining hall. I had promptly followed. Maureen and I looked at each other and cracked up. When I’d calmed down I told Erica about what Maureen had done.
“Awww…that’s so sweet….. Hey I’ve got an idea. I’ve got my camera right here. I’ve got to use up my film. Why don’t I take a picture of you two with Elmo? I’ll get triples made and send a picture to you two.”
Click! An instant in time captured forever, for the world to see. I still have the picture of Maureen and I, somewhere in my room. The picture is also imprinted on my memory and all I have to do is close my eyes and I can see it as if it were taken yesterday. The picture shows us as we were at sixteen I am slightly overweight with a chubby face a small nose with lots of brown freckles, long shoulder length hair (to hide my over the ear hearing aids) that can’t quite decide if it wants to be brown or blonde, and changeable blue eyes. I am wearing overalls and a Broadway show T-shirt. Elmo is nestled in the crook of my arm. Maureen has a mane of dark chocolate brown hair, pale Irish skin, dark freckles, and mole-like eyes. She is wearing shorts and a tie-dyed shirt. We are both standing together, grinning for the camera. Maureen and I both have an arm slung over each other’s shoulder and we are both making the “I love you” sign with our free hands.
Camp ended and school started. Finally the big day arrived! The day of the surgery I woke up starving and feeling like I’d been trapped in the Sahara for ten weeks. I grabbed my blue duffel bag, which had a change of clothes, and of course Elmo. My parents drove me up to Boston to Mass Eye and Ear. We got caught in traffic, and all that was on the radio were advertisements for Pizza Hut! This when I hadn’t had anything to eat or drink for twenty-four hours! Ah, the agony! We finally got to the hospital, where I was admitted and IV’d and all that stuff they do before surgery’d. The wait before going into the O.R. was long and tedious. The nurses put my dad,mom and I in a room with a TV but by the time something good came on it was time to ride the gurney to the pre-op line up.
I finally went into the operating room, Elmo held tightly in the crook of my right arm. About seven hours later I woke up in the Recovery Room and drifted in and out of a dazed stupor for about an hour. I fully recovered about an hour later so I got to go to my room. I was wheeled into my room and I suddenly realized I could hear clearly! It was as if someone had thrown a sound switch. The sound quality was like the difference between an early VERY scratched up vinyl record and the most modern CD and it was just like I was wearing hearing -aids on full blast. Everything was so loud! Sounds were sharper and it felt like I was listening to the world through a really powerful sound system.
The next morning (after a sleepless night) I was discharged from the hospital. I’d spend the weekend at home and go back to school on Monday. The next couple of weeks in school were kind of uncomfortable what with my ear healing (it felt like bugs were crawling around in there!) As I recall I spent lots of those two weeks at the nurse’s office and I went home early a lot. After my ear healed I could hear so well, that I discarded my right hearing aid. I kept thinking I was wearing hearing aids because I could hear so well. I could “feel” the hearing aids in my ears and at night I’d forget that I wasn’t wearing them and reach for them to take them out. I guess that was sort of like what amputees go through with “phantom pain”
In October I went back up to M.E.E.I for a follow-up and an audiological exam. I was happy about that because I got to skip school but I was also extremely nervous about what the exam would show. My mom and I went to the audiological testing center. We waited for about half an hour during which I read an ancient People magazine (How ancient? Let me put it this way. It had a picture of Michael Jackson when he was part of the Jackson Five) and my mom read a fairly recent (within this century) McCall’s. Finally the audiologist came out and took me to the testing booth. “Beep” I raised my hand for my right ear. “Beep” I raised my hand for my left ear. “Say the word fish” I heard in my right ear. “Say the word fish” I heard in my left ear. I was hearing the same in both ears! I started getting a weird feeling in my stomach and began to sweat nervously. Did this mean the operation hadn’t worked after all? The audiologist signaled that the test was done and that I should come out.
My mom and I went back down the hall to Dr. Eavy’s office. After a few minutes I went in to see him.
“Well Torrie, It looks like something very strange has happened. I can’t explain it.”
“What is it?” I braced myself for the worst. but what Dr. Eavy said surprised me
“The audiogram showed something very weird. Your hearing has improved in BOTH ears.”
“WHAT?! Wow!” After that appointment I abandoned my hearing aids for good.
In December I went skiing with my dad at Wachusetts. We were going up the chairlift when I heard a noise I’d never heard before! It was some weird whooshing noise that I could not for the life of me identify. I couldn’t figure out what it was! ” Dad? Is that the wind? ” Wow! I could hear! How can I describe what it was like to be able to hear stuff I’d never heard before?
However soon my hearing started deteriorating. At first it was really subtle. I’d turn the volume up on the TV, or ask someone to repeat themselves. I told myself that it was just the effect of fluid in my ear from a cold. No big deal. Nothing to worry about. As soon as I got over the cold my hearing would return to normal. A few weeks passed. There was no change in my hearing. I kept telling myself it was temporary. I always went deaf when I had a cold.
Then I returned to M.E.E.I. with my mom for what seemed to be the ten millionth follow-up. I went to the audiological lab to be tested. Unfortunately this time I somehow managed to get tested by the world’s most insensitive out- of- it audiologist. She interrupted the testing to ask if I’d ever seen a speech pathologist, and if my teachers knew about my hearing loss!?!? (The way I figure it, she must have been from Mars.) When the testing was over she came in the booth.
“Well Torrie, I’m afraid I have some bad news for you. Your hearing has gotten worse…You should go back to wearing hearing aids.” I started to cry. I couldn’t help it. I was just really disappointed that the surgery hadn’t worked. The insensitive audiologist who was under the impression that I was suffering from “she doesn’t want to wear hearing aids and be different from everyone else it is” blathered on and on. My mom came in the testing room and we left the audiological lab and went to Dr. Eavy’s office yet again. He peered in my ear with an otoscope. Hmmm… Torrie, I can’t really see anything. Let’s see if anything shows up on a CAT scan.
I had a CAT scan and it showed that bone was growing in my ear canal and that was inhibiting my hearing.
I elected to have surgery again in May to remove the bone. Since it was so close to the end of the school year, I got to get out of school early, and I was tutored at home for finals. The surgery improved my hearing so I didn’t have to wear hearing aids most of the time. It was still very frustrating because I couldn’t hear some people. I went through my senior year with no amplification device. ( I made honor roll for the first time ever, in my academic career!) However I decided to get a hearing aid for college. I could hear pretty well even without aids, but I wanted to be able to hear my professors, and I didn’t know if I ‘d get really soft spoken professors or not. After I got home from a 3-week trip overseas, my dad took me to be fitted for hearing aids and I went off to college.
My hearing aid arrived at college three weeks after I did. Luckily I got along without it in my classes, because the college had a ’80’s model unilateral FM device, which I used. My speech reading skills also came in handy for when I wasn’t in class. Still I couldn’t wait till my hearing aid arrived. Every day I checked at the college mail office, and finally one day I checked and I had a package, which turned out to be the hearing aid. The second I opened the package. I put my hearing aid in and stepped outside and I could hear the wind again!
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