My recent surgery...

The day before surgery - 30 seconds
short of new PR - 1:58:08
Atlanta Half Marathon (7th time)

Hey! Okay, so I thought I'd write a little post on here about my recent surgery... I am back at school and doing well, but still recovering - hence the fact that I am not allowed to run yet.  Anyway, back in 2009, we found out that I had a "lesion" (nice word for "STINKIN' NF TUMOR!!!") along my femoral nerve, in my upper right thigh.

I had been told by coaches that I "favored" one leg over the other, which is common enough to not create any concern- it just means that you strike and push off a tad stronger with one leg.  Other than that, the first symptom in Spring of 2009 when I told the sports trainer that I couldn't feel my kneecap, which created concern- knowing I have NF2, and so I was told to get an x-ray of my knee.  They sent me home and told me that I was fine, but I knew there was a problem.  As the months went by, that area of numbness continued to spread to much larger areas of my leg- up my thigh and down my shin.  I was scheduled to have surgery to remove the now "enhancing lesion" as they called it after my 2nd MRI of the thigh.  About a month before that operation that was scheduled for September 2010, but then after I had done the pre-op testing, it was CANCELED, because they wanted me to get more tests done!  I had to get an EMG to measure the electrical activity of various muscles in my leg, by sticking little needles into the leg muscles. If you are wondering, I think the pin they stuck in my shin muscle was the most painful of them all!

My entire right leg seemed to be getting weaker, particularilly the quad!  When I tried to do the leg extension machine the gym, I could struggle to do 10 pounds or 15 pounds at best, on my right leg, but it felt like about the same effort level to do the same thing with 50 or 60 pounds on my left leg.  I could even see the difference the the size of the leg muscles- IRON on left and JELLO on right! Despite all of that, I continued running, although my stride altered but my body learned to compensate for the uneven strength... my right glutious-maximus (rear) became stronger than my left side glute.

I'd run my first half-marathon (13.1 miles) back in 2003, and had run a best time of 2:01, but usually ran times in the 2:03 - 2:10 range for a half-marathon run on roads, and all of this time just dying to break that 2-hour mark.  A few months after getting diagoses of having this tumor in my leg, I ran the Atlanta Half-Marathon 2009, for the 5th time, plus i've run other halfs as well, and I FINALLY did it... 4 minutes off... I ran 1:57:38 and you know what? I felt like I was on top of the world!  took off those shoes and had terrible blisters but PAIN IS TEMPORARY! (I've also done five full marathons.)

As of June 2010 MRI, the "enhancing lesion" measured approxtimately 5.3 x 3.6 x 1.9 cm.

And after that, I just kept on running... sometimes I told people that I had a tumor in my leg, but usually they didn't believe me, since I'm always running and biking all over the place.  My boyfriend and I did some winter road races, in sub-zero temperatures, and then an open snowshoe championships race.  He decided to do a triathlon when I had gone home for a week, and the next year we both did it, and he preposed to me at the finish line!!!! <3  ...then we both did Syracuse 70.3 IRONMAN!  (and I'm not supposed to be able to swim in open waters or to ride a bike due to lack of balance nerves... and I still had the leg weakness caused by that darn NF tumor!)

Steve kept telling me over and over that pretty soon I won't be able to use the tumor as an excuse for going slow, because when I recover  and the nerve heals, if will get stronger! ... I LOVE HIM!!!

In October, I went to Boston for doctor's appointments, pre-op, met ups with a girl with NF1, Jen, and also participated in many hours of a medical research study about vestibular balance. A week after that, I ran my first ever 50k... yes, that is 31 miles! 

So, the surgery? It FINALLY happened! November 25, 2011, 9 days ago... and yes, the day after running my 7th Atlanta 1/2 Marathon, and barely missed a P.R. time by only 30 seconds, and finished in 1:58:08... I've only made sub-2-hours twice ever, this one and the other I mentioned above.  After the race i cleaned up, and packed up the car, and my parents and I flew off to Boston, where I would have surgery the next day!  We had celebrated our big Thanksgiving family dinner, the prior Sunday, with my grandmother, but we still had Thanksgiving dinner left-overs for the actual day. 

My surgery was at 8am and I woke around 11:15am, I think- well that is first time I noticed the clock. The surgery went very well and my doctor said that the tumor came out relatively easily with nothing apparent left behind.  I was originally told no running for 1 month, but later was told "2 weeks, if its not painful"!

I got discharged the following day and then on Sunday, at 7am, my Mr. Prince Charming came and picked me up and whisped me away, and drove me all the way back to Rochester.... Did I already say how wonderful he is or what?! NO, YOU CAN'T HAVE HIM!

I returned for my follow-up appointment 3 days ago, and he said that it looks like it is healing very well.  When I casually mentioned to the doctor that I had gone to pilates class 3 days post-op he just said "hah, I knew you would!" My mom was there for my follow-up and we met up with Jen also and got lunch. I started Physical Therapy on Friday, one week after surgery.

I will be up and running, very soon! 
I should get back to studying now!

The class is over (and I got an A!!!) ...BUT, this project continues!

This is a post that I wrote a few years ago, about this blog project. It began to die off but I think it has a lot of potential to keep it going. Please read on and consider contributing your story, artwork, poems, or other works...
____________________________________________

Hey, I just wanted to let everybody know that the class for which I began this project has ended, and I really appreciate all of the wonderful contributions that people have submitted, BUT... I am continuing this project and hope to continue getting some contributions of more people's stories... stories of overcoming adversity, ups and downs, surgeries, medical trials, running for research to cure NF, and more!  

Tell your story here, please! To get access to post here, please message me or send me an e-mail at anne.s.noble@gmail.com to tell me your name and your e-mail address, and I will send you an invite to gain permission to post in this blog.  The reason that I am continuing this project is because I really like what I have so far, and my professor even said that he thinks it could have potential to become a book. (If you would NOT want to be included in this future book idea, that I hope to become a reality, you MUST let me know.  I will respect all privacy rights but for publishing purposes, I think that the screen names MIGHT need to be switched to real names, but I am not sure, yet.) 

2011... __________________________________________________________________________

ALSO, I recently switch the automatic view on the blog to be "Dynamic Views" - Please let me know if this setting is causing you trouble or technical difficulties.  I'm just getting used to it myself, and kind of considering switching back to one of the older views.  If you prefer this, please let me know!

I am home for the week, and really missing my fiance, Steve!!! <3

I am having surgery in a few days for the NF2 tumor that is on my right femoral nerve in my upper thigh, so I would appreciate if you pray for me, if you do that sort of thing. The hopes of myself and my doctors is that the muscle in that area will be able to regain some strength after surgery. Thank you! God Bless!  My surgery will be at 8am in Boston, on Nov. 25th. (of course the day after running a half marathon!)

The Meanies Social Group and Elliefest 2011

They went the distance for this little girl.

The town let them plug-in and use town

facilities for cooking etc.

The Electric company brought a bucket truck to help

hang her banner.

I made some great friends that day,

The Meanies became my family,

the prayer warriors did too.

The creator of Elliefest seems to be missing from this picture. I will

have to replace it with another.

Silenced Marathon

(WRITTEN IN 2008)


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.

**** Prettiest Smile ****

It is a hot summer day in 1996; I am nine years old. (Yawn!) … “Anne… Sweetie… Wake up! It is Saturday. Will you help me make the pancakes? Shhhh… Mommy and Ken [my little brother] are still asleep,” I hear Dad say. I am hungry, so I bound out of my cozy old double sized bed that lies in the center of my big bedroom, with light green painted walls surrounding me. I dash downstairs, as if I were running from something. I get out Aunt Jemima Buttermilk pancake mix, 2% milk, 2 eggs, Canola oil, syrup, a bag of Nestle-House chocolate chips, and a brown-speckled ripe banana. As I mix the ingredients in a large bowl, and enjoy the feeling of squishing the unpeeled yellow banana running between my tiny fingers, Dad tells me that he got more Olympics tickets for my family to see some games in the next few weeks. “Maybe I can be in the Olympics someday”, I think to myself. I watch Dad flipping the oozy slabs of light brown batter into the air, and then like magic each one lands perfectly back on the hot griddle. I walk outside to feed our old yellow Labrador retriever, Destin. I feel the heat of another summer day in Atlanta as the sun bakes against my youthful pale skin; it is a perfect day to go to the neighborhood pool.
(Squeak) I swing the kitchen door open. I see that Mommy is awake now, and the smell of scrumptious pancakes fills the air. She is taller than me, beautiful like a Dalmatian, dark brown hair, smells of flowers, Pantene shampoo, and Lever 2000 soap. She is wearing her long pink terry bathrobe, as I run up to hug her. She whispers into my ear “I love you.”
Mom, Dad, Ken, and I sit at the circular kitchen table; I happily gobble down my pile of pancakes. Mom comments to Dad; both look at me and ask why I am making goofy faces. I tell her that I’m not making silly faces or playing childish games. Mom walks me to the bathroom; she tells me to look into the wide mirror, which covers half of the wall. I obey. I look into the mirror, but I walk away as I deny seeing anything. It is the summer after second grade. One side of my face has become paralyzed, overnight.
Within ten days my parents had me on a plane to California for surgery to remove a tumor on the auditory nerve of my right ear. I was already functionally deaf in this ear since I was seven years old; that was also when I had learned that I have Neurofibromatosis Type 2 (NF2), a rare genetic disorder affecting 1 in 25,000 birth, which commonly causes benign tumors on the auditory nerves and spinal cord. While I was very scared, I knew the surgery had a great outcome, because I woke up grinning from ear to ear, something that I couldn’t do before going into surgery. With the medications and lack of activity, I gained a lot of weight that summer. When I returned to school to start third grade, I had a horrible time. I was living in a nightmare, a nightmare that I couldn’t wake up from. At night I cried myself to sleep. There was a mean girl and her friends on the playground who harassed me every day and called me “pregnant.” My friends from 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.
**** Cookies + Brain Surgery = Babies ****
I am chubby. I am ugly. Half of my head is shaved. I wear a bandana, trying to hide, to hide from the world. I wish I can disappear. I am only nine years old, and those mean girls call me pregnant. I am a child. I am not pregnant! Now, my friends have left me; they walk away. I run. I run far, but then I stop. I am breathing harder than I ever have. My tiny legs do not take me as far as my aching heart and trampled mind have the desire to go. I feel like a baby bunny in a field of big bulls. The bulls are chasing me. I will die, not because I am small, but because they are huge, mean, and hungry. Surely I will die. I will wait until I get home before I cry. I am a big girl. I am strong. I have dreams of flying away, like Peter Pan, I want to fly away.
The surgery and its effects caused me to have a horrible time fitting in at school. I went through a lot of changes in my schooling. Situations similar to what happened in third grade repeated through elementary school and middle school. When it was time to go to high school, I decided to go to a large public high school with magnet programs in arts and sciences. 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.

**** Running ****

Why do I run? When I started running, I could barely run a lap on the track. I struggled to run a 5k. I pushed to run a 10k. I went for a run, continued for nine miles, so I decided to run a half marathon. I didn’t think I would finish, but I never gave up and each time that I ran farther, it made me hungry for more. I fell in love with running and I had to prove to myself that I could go farther. Some friends and even my mom were worried about me finishing a marathon, so I had to prove something to them.
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.

**** “You Will Be Deaf!” ****

Nine years have passed; it is fall 2005. “I’m a senior! Class of ’06!” I’ve been waiting for this all of my life! I’m excited that I will go to college next year. Finally I will get to fly away. I am sad because this is my last season running on the high school cross-country team.
It is October 20, 2005. I stand in a long line at Hartsfield-Jackson Atlanta International Airport, and soon we are soaring to the sky. I am flying with my parents because I have doctor appointments in Boston, even though I would much rather be in Senior English, AP-Art, and even my awful Algebra III classes today. Boston is chilly with strong winds. We get a taxi from the airport and find where to go. At Harvard Medical Center, upstairs and down the hall, a large sign reads: “Massachusetts General Hospital - Neurofibromatosis - NF2 Clinic”. I check in at the desk and then sit down to wait. There are a few other chairs and an old lady knitting a blue blanket. I feel a little queasy. “Ann-ee Shi-t-gii-ley” (stupid people always say my name wrong), the nurse bellows to me from the door. She leads me to a room around the corner and tells me to wait. The doctor comes in. After looking over my files and MRI scans, she looks straight at me and says: “You might, well probably will, become deaf at some point in your life.” I am shocked. I can understand her perfectly. I respond, “Yeah, maybe when I’m 80!”
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 can make my awful reality disappear. I am feeling sick, confused, mad, and betrayed. I have been punched in the guts. I think the doctor is crazy. Somehow, I have the knowledge to realize that even a friendly dog, cookies, or ice cream can’t ever take away the truth. My parents and I catch another taxi to Logan International Airport, and board a plane back to Atlanta. I am sitting in my seat on the plane and the engine is loud. I am really upset, and I don’t want to make a scene in front of all those strangers, so I write notes back and forth to my dad, who is sitting across the aisle from me, on my right. My mom’s tired head leans onto his left shoulder as she drifts off to sleep. I remember the conversation:
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 happens 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, when you have a 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 lose your job! How would you feel?
Dad: I would be very sad. …
Me: I still hate you! …
I was angry at the doctor, my family, even at God. I didn’t know what to do, so I left my seat to go sit in the back. In the plane’s tiny bathroom, I cried my eyes out, like streams go into rivers, forming the flow the creation of ponds and oceans. I vomited into the airplane toilet. My heart hurt deep inside.

**** Tears. Blood. Tumors. Senior Year. ****

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. I have a hard time focusing on my classes.
Today is a mild day in late October. I can’t hold it back at my cross-country meet. I have just run as hard as I can in the Boling Park Invitational, but I have fallen twice and finish three minutes slower than last year. I am upset, not about the race, but about my life. I gulp down a little paper cup of Lemon-Lime Gatorade. I do not know that I have four stress fractures on both legs, but I feel the agony and anguishing pain of the grinding bone, along with strained muscles. I feel a pat on the shoulder; “good run,” my coach says. Blood streams from my knee down to my muddy sock, my face is red as a tomato with a small tear that rolls down my cheek. I limp across the damp lush green grass, a little into the edge of the dusky woods, just yards from my team, find a stump, sit down and cry. My shins hurt and my back aches, as if a thousand needles have stabbed me. I use ibuprofen because it helps a little with pain, but I am hurt; my heart is bleeding. I feel as though nobody can possibly understand what I am going through. Do people even know about NF2? Do they know about benign tumors on the spinal cord and auditory nerves? Do they know that I am hurt?
Two months later, the doctors gave me a steroid medication in hopes of saving my hearing. I returned to Boston on the second day of December. I had surgery two days later 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. Thank God, that was successful and I could still run! As soon as I got discharged to leave, rather than going home, I was on a plane to California for another surgery. Two days later, the surgeon operated to decompress the auditory neuroma tumor of the eighth cranial nerve on the left side, which was caused by my rare genetic disorder. That surgery did not help. On Christmas Eve I had another one. I spent Christmas in a hospital room in Los Angeles where I could see the famous Hollywood sign from my window. My dad gave me a small white iPod wrapped in shiny gift-wrap; it was quickly exchanged for a portable DVD player and two movies: Forrest Gump and Four Minutes.
The New Year came, 2006. I was in a complete state of denial, because I was not ready to accept such a sudden and drastic change to my life. I had viewed myself as hearing, 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. I figured I was hearing, even though I could not understand speech. I probably had tinnitus, which is a roaring sound in the ears. 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 quarter economics class, which I took with the help of a captionist who sat next to me with a laptop computer. I didn’t know anything about deaf people, culture, or sign language. So 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 went to deaf gatherings and introduced myself at a meeting of the Association of Late Deafened Adults at the Jimmy Carter Presidential Center. I felt like God was punishing me.

**** “Can You Read My Lips?” ****

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 1: eifef ndjf ferf jkf geraf rfer pust dosesee fssdu sfed fhc? (cannot understand)
Me: Hi. How are you? Wait, what? (Tries to read lips, but the speech is too fast.)
Person 1: nefirbind. Arrr yru detvf orr sobethieg?
Me: Um…
Person 1: (turns away to talk to another person, and then looks back at me, laughing…)
Person 2: (slowly shouting) CCAANNN YOOUUU (points at me) RRREEEAADD MMMYY LLLIIIPPPSS??? (Person points at mouth, laughing, and looking at the other person.)
Me: *** I don’t know what to do, so I leave. ***

Don't laugh at me
Don't call me names
Don't get your pleasure from my pain
In God's eyes we're all the same
Someday we'll all have perfect wings
Don't laugh at me

- Mark Wills

**** Maryville College ****

It is the middle of August and I’m packing my things to leave home and go to college. I have been accepted at my first choice, Maryville College, a small Presbyterian college located in the foothills of the Smoky Mountains in eastern Tennessee. A month ago, I got a letter in the mail: “Congratulations! You have been selected for the Church and Leadership Scholarship!” Mom jumped up and down, she was so excited. The school offers sign language classes, so I will take that. Before I lost my hearing, my parents thought Maryville would be a good choice for me since they knew there was a chance I would become deaf at some point in my life, but hoped medicine would advance before that happened. They 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. I haven’t even started college yet and my ability to understand speech is already lost. I do not understand why God chooses this fate for me, but I pray for a miracle that He can make my hearing come back. At least, I’ll get to run cross-country again! I will enjoy my time at Maryville, although communications will often be bitterly frustrating. I see friends laugh, but what is so funny? What? “Never mind”, they say.
They are my friends, but they don’t know that they hurt me. “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 just a few months ago, I could understand that fine. I’m having dangerous thoughts, but I don’t have the courage to attempt anything serious. What is happening to me? Who am I? What have I become?
Maryville would have been an ideal small liberal arts college for me if I were still hearing. I took the first class in ASL, but no one wanted to practice out of class, so I didn’t progress very fast. I made a lot of friends even though communication was difficult, volunteered at a small church, and ran on the NCAA-Division III Women’s Cross Country Team.

**** “Suck It Up!” ****

By a year later, 2007, I realized that I really am deaf. On January 29^th, I received a letter via snail mail, informing me that I needed to have surgery again because that same tumor had grown more. I knew that when I woke up, I would hear no sounds, but I didn’t know what total silence would be like. At the same time that I had that tumor removed, I also got an Auditory Brainstem Implant (ABI). It is similar in concept to a cochlear implant, but works differently. It has fewer sounds, and is made for people with detached auditory nerves. I was scared but I sucked it up, just like my cross-country coach always had told me to do, when I ran hill repeats or speed intervals. No pain, no gain. “Ya aint gonna get nowhere in life, if ya don’t learn to suck it up.” Complain about heat, cold, injury, or fatigue and coach yelled “suck it up!” My doctors said that it had to be done, or I could die from the tumor’s pressure onto my brainstem, so I bit my tongue and sucked it up.
It was a tough decision but I decided not to return to Maryville. I felt like my deafness and the people around me formed a tall brick wall and I was a little bird with clipped wings. There is a world of opportunities on the other side of the wall, where I was before my wings were clipped and the wall was built. I wanted to move on in life not dwell on my loss. I researched and found out about RIT/NTID and the large deaf population in Rochester. I talked to a few students that I found through friends in a Facebook group, and they were helpful. Having lived all my life in the deep South, wearing flip flops to school most of the winter and seldom seeing a snowflake, I imagined freezing to death in 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 little of it, but for some reason it seemed right. I met up with some friends I had met though a Facebook group, more cool people, and visited the deaf Bible study which was amazing.

**** 26.2 Miles ****

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. A photo shows my fans all in bright yellow t-shirts and mom waving her big South Carolina flag; I stand smiling, sweaty, tired, wearing my big marathon medal around my neck. I felt great accomplishment and happy that I finished. I felt sore, tired, and wondered how I would make it up four flights of stairs to my writing class the next morning. 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 across the country.

**** Eating Jell-o In Silence ****

Today is April 2, 2007. I am on a plane flying to Los Angeles, California. My parents, Ken, and his girlfriend Nicole are with me. Tonight we will go to Santa Monica Pier, hang out, go run and get dinner. Tomorrow morning, I will check in to House Ear Institute / St. Vincent’s Hospital, because I have to get a lot of tests, EKG, blood work, even another damn hearing test, and have surgery the day after that. I wish I could fly away.
Two days later, the day I dread is here. I glance at my Timex watch; it reads “5:02AM. – APR. 4.” 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’m thirsty, but I am not allowed to eat or drink anything now. I’m scared, but I act mature and courageous.
“It is another surgery, just another damn 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 year, and I know how they sound now. My parents and I go sit in the waiting room. A nurse walks up to me and 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 death warnings. She straps a plastic bracelet with my name and numbers printed on it, while she continues to talk to my parents. I sit, fumble, and observe my surroundings. There are chairs, people, and that strange scent of blood, cleaning spray, and bactericide soaps. Dad writes notes to me; he tells me to not be scared. Soon I am lying on a stretcher, wearing another hospital gown and the weird no-slip socks. I am still scared as I grasp my mom’s hand for comfort; I try to remain calm. She lets go, after the surgeon shaves half of my hair off. He gives me a shot, and I fall asleep.
Many hours later, I wake up. I am groggy with drugs and wired to machines. My head hurts; a white gauzy bandage that looks like a large turban is wrapped really tight around my head. I hear sounds, but I soon realize those sounds are not real. The sound is silence; now I know what silence sounds like. Silence sounds like static, but sounds can be felt by vibrations. I have been told that silence is golden, calm, peaceful, a sanctuary, holy. Wrong! Silence is dark, empty, mute, speechless, scary, sulky, and black like death.
Tomorrow I will move from ICU to my own room and eat real hospital food, not just urine-colored lemon-flavored sugar-free Jell-O. I hate Jell-O! I continue to improve. I am mad when I see the signs outside my door; one says “FALL PRECAUTIONS” and the other “HEARING IMPAIRED.” I get a huge pile of get well cards! I am so drugged that I manage to start speed-walking laps around the nurse’s station 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.
Two weeks later, I was back at home in Atlanta. I slept a lot, ate a lot, felt sad, and wondered, “Why am I deaf?” Sometimes I slept all day, and then went downstairs, where I slept more, watched television, text messaged, and daydreamed – all day. As soon as I was allowed to drive again, I went to visit my friends at Maryville College. They ran over and hugged me so tight, it was like they wanted to break my ribs! I was very happy to see them. Some asked me silly questions like, “Can you hear?” I wanted to fly away.
I became eager to run, but I was told to wait. I took the dog for walks, and by the next week, the dog walks had greatly increased in length. I was surrounded by sounds, but all I could hear was silence. When I saw people talk, there was only the sound of silence. This was my life, a silenced marathon.
It was the beginning of May 2007, and my long walks became walking, then jogging. It did not hurt; it felt good, so I kept going. Within a few days, I got in trouble, because I was not allowed to be running yet. My dad looked angry as he quickly scribbled 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 was angry. I probably slammed the door, a silent slam to me. I went to the bathroom. I cried, silently. I knew I jogged a little but I didn’t know it could harm the ABI. I wondered why he had not told me that. Inside of me, I was scared. I was told I had ruined my expensive implant. I waited two weeks before I was allowed to run; I waited two months before I knew if jogging a few miles had ruined my ABI. I wanted to fly away.

**** New Sounds ****

Two months have trickled by. 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. The audiologist finds me and leads me to a small room with three chairs and an old PC computer. He shaves a one inch circle on my head, just behind the ear, and attaches a small sticker that has a metal disc in it. I get hooked up. How strange to have a plastic thing hooked over my ear and a small disc on my head with another wire coming down from that to the processor. I sit and wait as the audiologist presses buttons; suddenly I hear “BEEP!” I have never been so eager in all of my life to listen for a little “beep.” 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, but I cannot comprehend the sounds.
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 a sick frog!
Mom laughs; she looks a bit horrified, but the audiologist explains that it will take time for me to get used to it. I immediately think that I will not use it, because I cannot comprehend any of these sounds.
It has been a 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.
From my camp journal:
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 I can 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 courage to fly.
- Me
My prayer partner, Juliana, and other awesome friends patiently repeated things, wrote notes, and learned to fingerspell, which meant a lot to me. They went that extra mile to write notes like they would for classes, for a counselor meeting, evening speaker’s story, or which song we were on. They wanted to make sure I didn’t miss anything; they helped a lot. I decided to give the ABI a chance, even though some people seemed to think it was magic hearing plastic.

Dance as though no one is watching you.

Love as though you have never been hurt.

Sing as though no one can hear you.

Live as though heaven is on earth.

- Souza

**** Epilogue****

**** Acceptance And Flying At RIT / NTID ****

I decided to transfer to RIT. Since coming here in the fall, I have made a lot of friends, improved my signing, as well as lip-reading / listening with ABI, and learned more than I had ever imagined. My time here thus far has helped me to change for the better and has helped me begin to accept myself for who I am. I still run, perhaps I run to escape the world or for the thrill. If you wonder what I am running from, it’s nothing, really. Now, I am not stuck in a shell. I believe in myself. I believe I can really fly...

I believe I can fly

I believe I can touch the sky
I think about it every night and day
Spread my wings and fly away
I believe I can soar
I see me running through that open door
I believe I can fly
I believe I can fly
I believe I can fly

- R. Kelly

NF: A Life Sentence

Pet therapy 2 days after my NF surgery

Hi everybody! My name is Jen and I have NF1. My mom and brother also have NF1.  I never thought anything of it when I was told I had NF.  Other than 'spots' and outer tumors, etc, I thought that was all NF was about. I never had pain or complications, etc. Then in 8th grade (around 1996) I came down with migraines as well as  the most terrible facial pain. I can't describe it. The pain would then extend to my neck. I woke up one morning with my neck all twisted, and I had to stay home from school for a few days. The facial pain got worse so I thought it was my wisdom teeth. Had an x-ray and from there he saw something strange (and it had nothing to do with my wisdom teeth) so I had 2 more x-rays, a CT scan and an MRI I guess to really make sure what they saw. The revelation: a tumor in my skull, and an optical glioma. Had a follow up MRI a year later, and nothing changed, so I didn't see anymore doctors for at least 10 years (when I moved to Boston and learned about the NF clinic at MGH). I actually didn't know the extent to my facial tumor until I moved to Boston. Imagine a flat jellyfish and that's what the tumor in my skull looks like. It wraps around my sinus cavity, my nose bone, my upper jaw (I have a lump in my jaw that dentists keep thinking it's some gum disorder), around my temple (part of my skill is actually lifted at my temple) and somewhat behind my ear. so that explained the facial pain and frequent migraines! When I was first given the MRI, my doctors were not very clear about where the tumor was, how big it was, etc. So I am REALLY glad I am in Boston, and that my doctor is cool enough to show me pictures. Dr. Scott Plotkin is a good guy. :)

Thanks to NF I am short. I also have mild scoliosis and thanks to my optical glioma, I am partially color blind in my right eye. I wear glasses. When I was in school, of course, people made fun of my height and often made fun of my spots. One day people in my drama class passed a note around with a picture of a face and neck with spots everywhere (though I don't have spots on my face). I knew it was about me. I wonder what kind of pleasure that gave them to make fun of my cafe au lait spots.... silly.

Anyway, my face doesn't hurt as much anymore, and I rarely get migraines, but in addition to my facial pain, I developed awful lower abdomen pains for years that was worse than my facial pain. When the pain got worse, I thought it was a gynecological issue. Had ultrasounds, etc, nothing. Then I thought it was a  gastrointestinal issue. So I had an upper GI, endoscopy, colonoscopy and guess what? They randomly found cancer in my stomach- totally unrelated to my pain in my abdomen! This was in 2009. I am still dealing with repercussions from THAT surgery (mainly esophageal problems).

My NF survival wound. You can sort of see my scar
from my cancer surgery, which extends from my belly button
to my sternum. They recut a good portion of my old scar!

 During the summer of 2010, my abdominal pain became excruciating. I had my gastroenterologist run many more MRIs, etc, and turns out I had an NF tumor where I had pain. I didn't find out about this until February 2011. I then couldn't get a hold of my NF doctor until this past JULY to talk to him about dealing with it. Had a biopsy to make sure it wasn't a sarcoma (needle biopsies are terrible by the way! I felt EVERYTHING). The only thing that could be done for me (since pain meds did nothing even oxycodone for a <100 lb person did nothing!) was surgery. So on Aug 23 I had my first NF surgery.  Of course now I have some sensory nerve damage (that's slowly going away). I take 2400 mg of gabapentin a day and that helps tons! I recommend that for any tingling types of pain you might have! And visit a pain clinic. I see a pain psychologist and she is AWESOME. My primary care doctor is also awesome, gotta add that in there too :)

I still have pains in my left and right side. Before my surgery, my surgeon told me that my right side pain was just referred pain, and that it would go away after my surgery. Well, it hasn't. It took 7 years for doctors to finally find the answer for my left side pain, let's see how many years they will take to find something on my right side.

I additionally worry about new tumors growing. I never knew tumors can just randomly GROW with NF, but they do. That scares me. What if more grow back? What if I become in pain again? I seriously could not function from 2010-now. I don't know how I survived my first semester of grad school but I did. What keeps me going is that I know there are people who go through worse.

I call NF a life sentence because those with it have to ENDURE IT. They have to worry about tumors growing randomly, tumors pressing on nerves, surgeries, pain meds, etc. It is baffling to me how NF is so misunderstood, yet it is one of the most common genetic disorders. I am not downplaying other genetic disorders, but NF deserves more attention. Some people have no problems with their condition, but many DO, and when people DO, their problems are awful. And there's usually nothing that can be done about it.  Some people go deaf, some people become paralyzed, some people have disfigured faces, some people can't function because they are in so much pain (back pain, stomach pain, leg pain, etc). I really love how there have been more walks, more races and more fundraisers about NF.

This is Bob :) I have named
all of my tumors

There are several NF non-profit centers around the country that help put on races, etc, so you should check it out. Here is the Facebook link for NF Northeast. This is for Michigan This is for Arizona This is for California, and this is for Louisiana. ... that's about all I can find on Facebook!

I have a personal blog which chronicles my personal battles (and all the drama that occurs between me and doctors). Feel free to follow me and if you have a blog let me know so I can follow you!

Thank you for reading my story.