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!

Vestibular Research as a "lab-rat" for NF2

Total darkness

Chair moves left

Was that right or left

I think that went right

oh, definitely left

Lights come on-

then off, again.

Chair moved down

and down, again.

I know I can't say down-

too many times-

I'd go through the floor.

I think that was up.

Was that up or down

It is confusing

hard with no balance

Tilt to the right

Right, I think

Feeling weary now

Chair tilts to the left

Lights come back on.

I hear “start” and beep

I hear “respond” and beep

I have to decide

which button to press

I press the right

then press the left

Repeat hundreds of times

It was mentally exhausting... when I got back, I think I slept for 9 or 10 hours!

---------------------------------------------------------------------------------------------------------

 explanation...

I had an interesting experience on Thursday, I had two appointments and pre-op in Boston for my NF2 , but during the short time breaks before, after, and between each of those appointments and then some more on Friday, I participated in about eight hours of a vestibular research project at Massachusetts Eye and Ear Institute, that I had been asked to take part in. (They paid be a little compensation to do it, which was a nice bonus.) It was especially interesting because they had never done the test with a person with bilateral loss of balance nerves, nor a deaf person, for that matter. I had to sit in a strange looking big robot chair that moves on some tracks, in complete darkness, and then press either of two buttons to indicate which direction I perceived the chair motion having had made. My feet were on a platform below and moved in the same motion as the chair. It could move side to side, or up and down, or tilt right or left. Sometimes I could tell my feeling the direction my body moved, but other times I just had to press a button and guess! This task would be difficult for any person, but I think they were particularlly interested in working with me because they know I have no intact balance nerves, however do these things that I'm “not supposed to be able to do,” such as marathons, triathlons, etc.

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.

Calling... (Contributed with permission by Jess S.- Julia's daughter)

It starts as a whisper.
Many won’t hear it, but those that do...
Will start searching for it.
Some will look high.
Some will look low.
Some will look in.
Some will look out.
Some will look over.
Some will look under.
Some will look in the dark.
Some will look in the light.
There will be some that take to the skies.
And some who will take to the seas.
And deep into the forest.
Those that find it...
Will do many things.
Be they big or small.
Great or Grand.
They will change the world.
Because they found their calling.
So if you hear a whisper.
Go catch it.

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

I Would Still Run

If I found out tomorrow that my son was misdiagnosed--that there was another explanation-- I would still run. I know because of the people I have met. I see the look in the eyes of mothers whose children suffer from NF, and I think, "I must look like that to other people." Until there is an answer to all the questions. I will run.

For my daughter, Shannon...

For my daughter Shannon, who was diagnosed with NF2 in 2002.

I remember leaving home the day you were born. I thought, things will never be the same, and they weren’t.

What love, hope, inspiration and happiness you have brought into my life. I would walk into your nursery and you were always happy, smiling and reaching up to grab life with all the joys it can bring. That love of life and your ability to see good in all things around you has helped you and especially me deal with NF2.

Even in the face of adversity and illness you move forward with courage. You always find the positive side to the ravages NF2 causes to your body.  You have taught me so much and give me the strength to face what lies ahead. 

When NF2 took your hearing and you could no longer sing, you didn’t give up. You used your eyes to photograph all of the beauty you used to sing about.

When NF2 took your sight, you didn’t think of it as an ending but a beginning to teaching and helping others by showing them that no matter what their differences, or handicaps they are to be valued and can be productive members of society. 

Neither of us knows what lies ahead but together we can get through anything NF2 throws our way.  We will always move forward, always look up and embrace what NF2 can never take from us: OUR LOVE.

If I could take your pain away and have the NF2 instead of you I would.  I am always here for you. You are my hero.

A Tribute to the Parents of NF

It all began with “coffee” marks on my precious new baby’s otherwise perfect skin.
When the doctor said Neurofibromatosis, we entered a new world.
We didn’t ask to go to this new place. We didn’t buy plane tickets or get a triptik.
But we got there nonetheless.
...In this new world there were things we’d never heard before.
There were bone abnormalities called dysplasias, bowing, pseudoarthrosis, scoliosis…
There were tumors called plexiforms, neurofibromas, gliomas, astrocytomas…
Learning disabilities and developmental delays opened us up to things we knew existed, but never thought we’d experience.
Things like special ed, speech therapy, occupational therapy, physical therapy, social skills groups, CSE, IEP...
And there were tests.
Many kinds of tests: MRI, EKG, EEG, Neuropsychological, CT scans, x-rays, and the dreaded pathology reports.
Our lives hung on the news from those tests every three to six months, if we were lucky, every year.
It was a scary new world because you never could know what to expect.
The doctors all said, “Wait and see”.
It was all they could say. They didn’t know what the future would hold.
We learned to study statistics and pin all of our hopes on them.
Numbers and percentage signs, such powerful things in this world.
Prognosis was not a word in the vocabulary of NF doctors.
The doctors…
They were scarce and we had to search them out.
They weren’t always in our neighborhoods.
Often we traveled distances to find them.
They were specialists who we revered and respected.
There were Neurologists, Orthopods, Neuro Opthamologists, Radiologists, Anesthesiologists, Neuropsychologists, Oncologists, Cardiologists…
We hung on their every word in hopes that this time it would be good news.
We set up websites to share this news because telling the stories again and again became exhausting.
In this world we learned so many lessons.
We learned to look at our children in a different light.
We learned to cherish every moment even the impossible ones.
We learned to hug them and kiss them until they couldn’t stand it anymore.
We learned that they wouldn’t always be given the opportunities we used to take for granted.
We learned not to take anything for granted.
We learned how powerful a child’s smile could be.
And some of us learned how to say goodbye long before we were ready to.
Others learned how to console and many of us learned the power of prayer.
We learned to have faith because we couldn’t cope without God, an almighty power capable of such enormous things.
We learned to advocate, educate ourselves and others, raise money and awareness.
Our lives were changed forever.
But that wasn’t what we couldn’t handle.
Our children’s lives were altered to a degree of which we could not be certain.
Not knowing.
That was the part of this new world that consumed us with fear, got us on our knees to pray and that clung to every fiber of our being from the day we entered the world of NF to they day we leave it.
And when the cure is found, we can rest.
By Jesse's Mom

ELLIE RANEY

I am not a poet nor am I an author which will be evident when you read this. However my love for my adopted daughter is intense. Our coming to grips with her NF have tested my faith and my sanity. The NF friends I have made have a very special spot in my heart and a special place in my prayers. I must mention Mira here- my almost 19 year old, she picks up the pieces of me and keeps me together.

ELLIE RANEY

She is too young to run a marathon

She is too fragile to ride a bike

Her friendship is free to all

There is no one she doesn't like

Only two hundred and ninty miles

Most of it in the fast lane

Leaving home before the sun is up

Never does she complain

The St. Louis Arch to many

Is beautiful, awesome and bright

Unless you are a little girl that knows

It means the end is in sight

Her waist is 18 inches

Her first scar is over half of that

She sweetly thanked her Doctors

When they stopped by to chat

Ellie came as a foster child

When she was little more than two

I am humbled God chose me to watch her

And I know he will see us through

We adopted her when she was five

She has won many hearts in town

Every shot, stick, poke she gets

Nothing brings this little girl down.

Little Brother

Here are the lyrics to the song "Little Brother" written by Ben, for his brother Drew. Drew has
schwannomatosis, the rarest form of NF. It speaks to the unrelenting pain Drew and others with schwannomatosis cope with every day.

Verse 1:
Little brother don't be afraid
this pain will be gone one day
little brother I'm by your side
I'll help you to endure this fight
you are so strong and yet you are so weak
you'll overcome determined to succeed

Chorus:
the birds still sing
the sky's still blue
you've got Somebody watching you
watching you

hold your head up
march right on
we'll be right here 'til the war's done
(the war's...)

Verse 2:
Little brother don't shed a tear
you've got the strength to persevere
little brother I pray for peace
and ask a cure for this disease
now lead them on the world is in your hands
they'll follow you now give them your commands

Chorus:
the birds still sing
the sky's still blue
you've got Somebody watching you
watching you

Hold your head up
march right on
we'll be right here 'til the war's done
(the war's...)

NF never sleeps......

NF Endurance - Atlanta 13.1 - 2011

NF never sleeps.......


NF never sleeps so when 3:00am came along on our 12th wedding anniversary it was time to hit the pavement. We went out to Atlanta 13.1 to set up our hydration station to go spread some NF awareness.

So if NF never sleeps......... neither will we.

"Making a Difference... for NF." - Contributed with permission by Julia S.

Originally posted as a "note" on Facebook.com by Julia, on March 21, 2010

Julia- I glanced through your pictures, and there were plenty of great ones of you wearing neon yellow and running for NF, but I liked this one of you, for it's unique adventure and daring look!  :)

Posted from perspective of Julia, and the part after intro by her husband, Ralph. (also mentions their daughter, Jessica- college age, I think.)

Ralph was asked to write something about me....for a friend.... not sure what this friend is up to, but here is what he wrote.

Although many are not mentioned in this note I've put you here because you were all on that initial journey, helping me out on those long runs, or the short ones.... and I thank you.....

And I apologize if I have left anyone out... heading out the door so I haven't had time to check...

How can I make a difference. What can I do that will bring about a change to the way I live with this disorder, for those suffering with this disorder and ultimately solve the genetic puzzle that is NF (and for the uninitiated that NeuroFibromatosis).

This is the short story of Julia, my wife (I guess Dave would substitute my friend) and her continuing journey of life with NF.

NF was for many years just something she and I lived with. The ticking time bomb that might never go off but frequently "fizzed" with some alarming conditions. Being genetic there is a 50/50 chance that our children would have NF. We have one child - Jessica - she also has NF. As they say in Vegas - you roll a 7 and you crap out. For us it was 1 and done. That was 1986 and very little if anything was known about NF, especially in Australia.

In 1990, we moved to the United States of America. Julia quickly found out that NF was much better understood in the USA and had very active organizations supporting those with NF and especially for funding research into a cure for NF. Throughout the 90s it was not much more than just the annual checkup for Julia & Jessica - simple stuff like head & spine MRIs to check for tumors which if detected there tend to be shall we say "life changing"

The internet comes of age in the late 90s - and Julia finds many sites dedicated to NF - but the message tended to be the same "woe is me, NF has ruined my life". Not to downplay the seriousness of the problems the disorder can cause (such as learning difficulties, fine motor skills & coordination (try catching a ball or riding a bike without them), blindness, deafness and a host of others) but for Julia it seemed that nothing was being done and she wanted to "do something".

Do something translated to running.

There's a scene in the movie Forrest Gump where Forrest says "... My momma always said you can tell a lot about a person by their shoes, where they're going, where they've been. I've worn lots of shoes, I bet if I think about it real hard I can remember my first pair of shoes..."

Well I'm here to say that Julia has worn (out) a lot of running shoes. And I mean a lot of running shoes! It was the year 2000 and Julia began training to run the Dallas White Rock marathon late in the year. Having proved to herself that she had "the stuff" to run a full marathon her next objective was to run her first marathon for NF at San Deigo in 2001. In the USA, events such as city marathons, tend to big fundraisers. This was Julia's first fundraising effort for NF and raised over $5,000. We passed the hat around to friends and their generosity was outstanding. It was in San Deigo that Julia met Steve Kendra and Bob Scold and NF marathon racing team bloomed.

San Deigo 2001 was followed by NF marathons in Chicago 2001, Alaska 2002, Vancouver 2003, Virigina Beach 2004, Nashville 2005, Las Vegas 2005, Alaska (again) 2006 & Phoenix 2007. Roughly speaking her efforts were supported by generous donations totalling in excess of $40,000 to the cause of the Childrens Tumor Foundation, dedicated to research to "Solving the NF Puzzle".

In between those marathon efforts, we were also dealt some "life challenges"

2001 - surgery for Julia for an unpronouceable tumor that needed to removed from her adrenal glands (which if not removed properly would ensure death if she were to have a general anesthetic).

2003 - Julia has a spinal tumor - major surgey on spine T2-T4

2003 - Jessica (aged 16) diagnosed with a brain stem tumor!!! That will ruin your day. Thank God for Dallas Childrens hospital

2004 - Julia pre-cancerous esophageal cancer ... another day ruiner...

As one souvenir from Julia's marathons succintly says "Can't run from NF,... can run for NF!" And run she has!

And here we are back in Australia and after a 2 year hiatus, Julia has successfully staged her first "Coastal Run for NF" raising over $2,800 for the Neurofibromatosis Association of Australia (NFAA) Inc.

Her plans are to launch this event as the "Neuro-Enduro Challenge" raising the awareness of NF in the community and supprtoing the NFAA through the generous contributions of individuals and businesses.

What can you do to make a difference. Lots of things. This has been one of them