This Girl...

This Girl...
So there I was, at the end of my second quarter of college, about to go on spring break with Campus Crusade for Christ (Now known as Cru) Spring quarter registration had come and gone, and I had signed up for a class in American Sign Language, (ASL) because of the large deaf population on campus.

I go to meet up with the group, to leave for the airport, and I see everyone else has two carry-on bags, while I only have one. It had been a bit since I flew. So I asked the first person I saw who seemed outgoing, if we could have two, and she said yes, then proceeded to show me how to properly compress them by jumping on them. I went and grabbed another bag.
By the time I got back, we were just leaving for the airport. I wanted to thank this girl for telling me that, but it seemed like she didn't hear me. One of the other students going on the trip got her attention, and I noticed a small flesh-coloured piece of plastic behind one of her ears. This was odd, because she spoke well for someone wearing an implant. I didn't think much of it at the time.
We got to the airport early, and went through security without any problems. As we were supposed to, we had arrived early, so someone broke out a deck of cards and we started to play. That's when I noticed that this girl really was hard of hearing. Except, apparently, to me. She seemed to understand me just fine, while she'd struggle with other people.

We played cards for the hour or so before our flight, then boarded the plane, and due to our flight schedule, I didn't see this girl again until we landed in Florida. We were waiting for some checked baggage at the carousel, and this girl saw the sign that said "Don't climb on the carousel. " She promptly went and climbed on and pretended to be getting eaten by the baggage gate. She hopped off just before the baggage started to come out, and then we went to our separate cars for the three-hour journey to the hotel.
It was close to 1 or 2am by the time we got there, so we all checked in and went right to bed. The next morning, the whole group met up to go to the morning session, and this girl was there. I started talking to the interpreters, one of whom was my roommate for the week, and told them that I was going to be starting an ASL course in the spring. This girl was following the conversation and immediately offered to help me learn sign, something she had only done recently. I accepted.
As the week progressed, I started hanging out with this girl more and more. I found out that she was late-deafened at the age of 19 (Which I thought was weird because she couldn't be more than 18.) due to some genetic disorder called "neu-ro-fi-bro-ma-to-sis, typetwo." (Which I would learn more about later) This kinda struck me because I had only just celebrated my 19th birthday, and tried to think of how my life would be different without sound. I found out later that week that she was actually 21.

Thursday night, there was a speaker who gave a really good message on being a warrior for God. He talked about how we had to completely surrender everything to Him in order for us to fulfill our calling. I did, and that included my then-girlfriend, and my major in college. After the session, I was looking around at all the audio and video stuff that was going on, and thought, "Boy, I think I could do something with this if I switch to telecommunications engineering technology. I don't really like all the coding I have to do for computer anyway."

We came back after a week in Panama City Beach, and I had really formed a relationship with this girl. While there were two interpreters on the trip, there were also several deaf students who used ASL as their primary communication. This girl wanted to use voice, and practice hearing with her "super-ear." She could also understand my voice very well, for reasons I didn't know at that point. So instead of an interpreter, I spent the whole week with her repeating things that needed to be said or just talking, while she'd teach me signs and fingerspelling.
I also found out in those first few weeks that this girl had a weird obsession with this thing called "running." I had participated in indoor track in high school, but I was a shot-putter. My running was minimal. In soccer, I played goalie. In lacrosse, I sat the bench. My sport was swimming, and I had lost it my senior year of high school to chlorine-induced asthma. I thought maybe someday I'd do a triathlon, because I could still open-water swim just fine, and I rode my bike everywhere. It was just that third part, that "running" that confused me.
During the spring quarter, this girl took me to No Voice Zone, where I continued to learn and practice ASL. Through that, I found out about a weekend event between RIT and Galladuet, and a party that was hosted at the end of it. I went, and made some chainmail bracelets, because I was bored. I met this one guy there who was quite interested in the chainmail, and bought a few of the ones I had.

Shortly after, spring quarter ended, and the summer started. This girl drove all the way to Colorado by herself, and posted lots of pictures on facebook, of which I was very jealous. During the summer break, I ended up breaking up with my then-girlfriend, because I knew I had to, since God had told me to 3 months prior. A month and a half later, she was nearly killed in a car accident and through that we became close friends and remain so to this day.
While that was happening, this girl that I had met on spring break was still in Colorado, and I was working at a camp in Rome, NY, as a lifeguard. The rest of the summer flew by, and before I knew it I was back in school in September. When I got back, this girl invited me to go to running club with her. What's running club? I mean, do people actually enjoy running together? Apparently they did, and soon I was racing nearly every weekend at some 5k or other race. My first race was a XC fundraising run at a local high school. I won my age group by default, I think. This girl, and another one of our friends from running club, also did.

As fall quarter progressed, I started learning more about this "NF2" and all the problems it had caused for this girl, and I found out about this endurance-racing team that supports research that she was on. I learned about what the tumors can do to someone, I learned a little bit about what it's like to live with, and I learned that no matter what life throws at you, it's always your choice to stay beaten down, or get back up.

One day, I encountered the guy who had been so interested in the chainmail while at a deaf event with this girl. The next day, this girl and I were part of a 6-pack of Coor's Light that ran a 5k for Halloween. After I got back that night, I got a text from the guy I had met saying he thought it was so cute to see me with my girlfriend. I thought it was funny, since we weren't "officially" "dating" at that point, so I texted this girl. Shortly after I sent that text, I had a relationship request on facebook, which I guess technically makes it "official."

Throughout fall and into winter, I found out that this girl really loved to do marathons and distance running. Again, I found it weird, since I equate distance running with pain and suffering. (Still do, actually.) But before I knew it, I was running races during the winter. And the races were getting longer, first 4 miles, then 5, and then somehow on my 20th birthday, this girl suckered me into running 8 miles.

It was now spring break of my second year at school. This time, I went to visit her parents down in Atlanta, and ended up doing a 17-mile trail run all over a mountain on that break. Again, I'm not sure how that happened. All I know is I sprained my ankle.

We were only able to stay half of break week in Atlanta, so we came back to NY to visit my parents. And got into a minor car accident on the way home. That's a great way to have your girlfriend meet your parents: "Hi mom and dad, this girl is coming to visit and we got into an accident." No injuries, though. Just a fair bit of damage to my van. Not three days later, we decided to go for a snowshoe run at a local park and found ourselves at the open event for snowshoe nationals. We ran it, and rather enjoyed it, since it was a completely different experience to winter road racing.
Spring quarter came and went, a few more races here and there, I almost got pulled into running a half marathon on Long Island, but I managed to avoid that somehow. This girl and I decided to work at the same camp that summer, I would teach hockey, she would teach arts and crafts.
But a few weeks before we were to start that job, this girl decided to fall out of her bed and wind up in the hospital for 4 days during finals week. I was there as much as I could be, and I made her food and made sure she felt OK. It was at this point that her mother said to me "You're acting like a married couple right now." And I realized that was true, and I started praying about that idea.

After the bed stunt, we went to work at the camp. That had it's ups and downs, but for the most part, we enjoyed it. We had the same days and evenings off, and spent most of our free time together. After that summer, I decided to try doing an olympic distance triathlon on my mountain bike, since I was now able to run 10k at once. I chose an inaugural event at the same lake where I had worked the previous summer, while this girl was in Colorado.
I immediately got hooked on triathlons, for some reason that still escapes me. I then found out about a half-ironman in Syracuse that went, almost literally, right by my house. I said I wanted to do it next year. This girl said she'd do it too, even though she had no balance nerves, had a large tumor in her leg, wasn't supposed to open-water swim, and wasn't supposed to be able to ride a bike. I said "fine, whatever," half thinking that she wouldn't do it.
During that winter, I kinda fell out of the running that I had been involved in the previous year. I had started curling more actively, and most of my tournaments conflicted with winter races. This girl kept doing subzero winter races, despite growing up in Atlanta, Georgia. This spring break, she went back home, and I visited my grandmother in Florida.
Spring of my third year. (2011) I got a co-op back home for spring and summer, while this girl, who changed her major from interior design to multidisciplinary studies, took a few classes. During the co-op, one night while I was out of town in a motel, I called this girl's dad and asked for his blessing, as I was planning on proposing to her relatively soon.
Every weekend for two quarters, either she would come and visit me in Syracuse, or I would drive to Rochester to visit her. One of these weekends, I drove to Rochester and we did a trail marathon, even though I had told her I'd never do one. Another weekend, I drove to Rochester and we were going to do our first triathlon together. However, the swim got canceled, so it was a duathlon. Her real first triathlon would be the next weekend.
July 31st, 2011. It was 5 am, when we woke up to go to the same triathlon I had done a year before. It was at a lake where I had spent part of my summer every year for my whole life. It was the lake where I worked as a lifeguard for 6 years. It was the lake where I had done my first triathlon in 2010. It was the lake where she would do her first triathlon in 2011. My little sister came to watch and take pictures of us "racing."
I finished the tri in two hours, 38 minutes. My sister had been holding a small wooden box the whole time. In it was a ring. A ring meant for this girl. 26 minutes after I finished, I saw her running toward the finish line. I stood in the finish area with my hands behind my back. When she crossed the line, I gave her a hug, and said: "I have something to ask you..." To which she replied "You're supposed to be on one knee!" So I dropped to one knee, pulled out the ring box, and asked her if she'd marry me.
She said yes.
And then this girl told me that I was supposed to put the ring on her finger. I did. A few minutes later, the race director announced our finish-line engagement. We made (almost) all the compulsory phone calls, to share with our family, and then posted it on facebook.
Since it was the end of the summer, I was done with my co-op, she was almost done with her classes, I went for a little road trip to New Hampshire to visit some friends and family while she went back home to show her new hardware to her family. During my visit to NH, I did my first half-ironman triathlon, and enjoyed it immensely, other than the fact that I felt sick for the whole run.
A month later, this girl and I did our first race as an engaged couple. It was a half ironman. In Syracuse. My second, her first. We both finished, with both our families cheering us on. It was a wonderful feeling.

This girl is Anne Shigley. No, you can't have her, no matter how awesome you think she is after reading this. Anne's going to be mine (and God's) until one of us dies. How did I get so lucky? Anne, I love you. I never would have been able to race an Ironman without you nagging me to run, I never would have done a trail marathon, or a triathlon. We've had our ups and downs, but I'm always amazed by your drive and motivation, and that's one of the reasons I love you. I never would have become as proficient at ASL as I am if you hadn't shown me NVZ. And I may very well have ended up just another computer-game playing, single, nerdy, RIT student if it wasn't for you. NF sucks. It's cost you a lot that you valued. But if it wasn't for NF, I wouldn't have met you. I would have a different outlook on life.  And I love you just the way you are.  You're beautiful, loving, and compassionate, if a bit stubborn at times. (Although the tumors can go take a hike, I don't like them.) How does a southern-runner girl get engaged to an "eskimo-hockey-playing-canadian-boy?" I'll never know, but what I do know is that it's a match made in heaven. <3

Why you should NOT take up running....

My roommate read this and told me I needed to be careful because this might scare some folks, so here is your warning: 
IF YOU ARE A "NEWBIE" RUNNER...
DO NOT READ THIS!!!! 








I got the basic idea to write this when I was out for an 18-mile solo training run, on Monday afternoon. I jotted notes on paper and kept having trouble with formatting it, so its not perfect, but here it is...

     Shin splints
     Operations
     Muddy, very
     Energy draining
     Tripping and falling
      Illiptical Band Syndrome
     Metatarsals inflammation
   dEhydration
     Stress fractures

     Reptured bloody heels
     Undies chafing
   aNkle sprains
   teNdinitis of Achilles
     Intervals
  deNtal repairs
     Giant blisters

     Snot "rockets"
heaT poisoning
  fatIgue
     Nails on toes turned black
     Knee soreness
     Side stitches


    Sometimes running is no fun! 
   ...but then I remember why I do what I do! 
(other stuff from my lists that didn't fit well in there: calf strains, fevers, tumors, stomach aches, barfing, hallucinations, business in woods, frozen sweat... By the way, I carefully ONLY selected things that I have experienced since I began running, 9 years ago!)

Happy running! :)

My daughter, my hero

Our baby girl was perfect, simply perfect.

The first clues of NF2 were subtle. She was a little late to talk inteligibly and required some speech therapy, but it was no big deal. When she started taking ballet with her friends at three, motivated mainly by the pink tutu, the first task was to hop on one foot. When she couldn’t do that, she practiced alone in her room for a week until she came out gleefully hopping on one foot for laps around the house. Looking back, I realize there was an NF2 tumor already working on her.

Me and my daughter, my hero
Me looking on as Destin guards Anne - '87
After her 4th marathon- NYC '10

            When she entered first grade we had a parent conference about the termination of speech therapy as she no longer needed it. The counselor said something about her having done fine on a hearing screening test. My mind went back to the times I would call home from business trips. Sometimes when I talked with her we had a good daddy-daughter conversation, but sometimes it was like cross questions and crooked answers, as if she didn’t hear m
e. I said, “just a minute, let’s talk about that.” To follow up we scheduled a hearing test with an audiologist who at long last determined she was faking out the test, giving appropriate responses for the “bad” ear when she felt a vibration through the bone. This led to an MRI.

            In the early nineties, I carried a pager rather than a cell phone. I remember where I was when I got the page, and the pay phone I used to call my wife, and the window I was looking out when we got the news that our perfect child had “neurofibromatosis type 2,” something I had never heard of.

            Over the next week, I did what I do. I researched. Somehow I found Dr. MacCollin at Harvard and talked with her by phone. She told me there is wisdom in “watchful waiting,” and to always seek second and third opinions before any surgery. She said that the worst outcomes she saw were when doctors who knew litte about NF  saw a tumor and felt that had to immediately cut it out right away. So we watched and waited.

            It was nearly two years later, on a Saturday morning in the middle of the Atlanta Olympics. We had tickets for some of the events, though none of the really “hot tickets.” My little girl, a Brownie looking forward to third grade, came down to Saturday our family pancake breakfast with one side of her face distorted. At first I thought she was just goofing around. After a few minutes we realized that the tumor the doctors had been watching was affecting a facial motor nerve. On Monday morning I was on the phone to Dr. MacCollin at Harvard. She gave me a short list of surgeons who had enough familiarity with NF2 to consider, and I started calling. Someone from South America cancelled a scheduled surgery at House Ear Institute and within two weeks we were on a plane to see Dr. Brackman in Los Angeles.

            In scheduling surgery I had a long talk with a nurse at House Ear. I asked her what to expect. She told me as kindly as she could of the sad outcomes they too often saw with NF2 patients. I recall laying across the bed, a hardened middle aged man, crying my heart out for my little girl, then pulling it together to put up a cheerful front for her. She later admitted that she was afraid she was going to die. So was her little brother who went to stay with cousins.  

            In LA, the doctors told us that they expected it would be necessary to sever her facial motor nerve, and that she would never smile again on that side of her face. Maybe in a few years she could hold her mouth straight. That night before surgery we prayed. I got on the phone with cousins across the country and we prayed together. In the morning, before surgery, I got a container of salad oil from the cafeteria and followed the directions in James 5. All through the day I prayed.

            When she woke up in ICU, she was grinning from ear to ear and asking for a hot dog. The other ICU patients had unbearable nausea and couldn’t bear the thought of hot dogs.

            The next decade was often an ordeal. She returned to her elementary school bloated by steroids with hair combed over the shaved side of her head. Mean kids ostracized her and friends didn’t know how to come to her aid. We kept seeking the best advice and moved her from one school to another seeking the best fit. By 7^th and 8^th grades she was at a very small school for kids with learning differences, where she began to thrive. However, she insisted on going to a “regular high school.” She chose a visual arts magnet program at a high school a few miles from home. At freshman orientation our chubby little girl asked what were the no-cut sports, and signed up for cross country, swim team and track. After driving her to the first morning of cross country practice at 6:30 AM, I sat in the car and watched as she struggled to run half a lap. Little did I suspect that she would become a marathoner and triathlete.

            The summer before her senior year, her doctor said the tumors on her spinal cord and in her “good” ear had grown. It was time to get something done about them. He thought she could get past her senior season in cross country first. During the fall it appeared that her gait was thrown off by the spinal cord tumors. She ran several meets with stress fractures in both tibias and both fibulas before she finally had to stop. (At the end of the season she received a special award for courage.) In October we flew to Boston where Dr. MacCollin told her that someday she would become deaf though probably not right away. My little girls said, “yeah, maybe when I’m 80,” but had trouble hearing us talking to her at the art museum afterward. She wept silently on the flight home. Her hearing grew fuzzier over the next few weeks.

            The day we flew back to Boston for surgery on her spinal cord tumors, her hearing blinked out. We were reduced, for the first time, to communicating by writing on a whiteboard. While Dr. Coumans was skillfully removing spinal cord tumors we were on the phone to House Ear Institute scheduling surgery to decompress the tumor pressing on the auditory nerve of what had been her “good” ear. As soon as she  was released to travel we flew directly to LA. At that point she had 4% speech recognition. Decompression surgery was attempted right before Christmas. We would have Christmas in the hospital, so we flew her brother in from Atlanta and I bought a tacky metal Christmas tree for her hospital room. She got a staph infection in her back that scared us and the doctors to death.  We remained in LA until after New Year’s Day and for the first time sought out theaters with captioned movies.

            My daughter returned for her last semester of high school using a captionist in the one remaining academic course required for graduation and began taking ASL at a community college in the afternoons. She insisted on running before it was permitted, rebelled at restrictions on driving until we could get her checked out by a hospital program that clears people to drive after medical situations, and within a few weeks drove herself to a meeting of the Association of Late Deafened Adults. Her college choice quickly narrowed to Maryville in Tennessee, which has a deaf studies program and a spot for her on the cross country team. She began networking with other young folks with NF2 through the new technology of Facebook, and never slowed down.

            The following fall, she had to be at Maryville for a cross country team meeting at the end of the day of my mom’s 80^th birthday luncheon. I had just gotten up to talk to the assembled family and friends when my little deafened girl came up, gave me a hug and a kiss, and walked out to drive away to college. That was the second time I cried.

            Through her freshman year of college, communication with doctors did not stop. We were advised that she could not wait til summer for surgery to remove the tumor in what had been her “good” ear and install an ABI, as there was severe risk of facial paralysis if she waited. During her spring break we visited RIT / NTID in Rochester, then she ran her first full marathon in Atlanta with a crew of girls from her dorm at Maryville turning up to cheer her on. Then we all flew to LA again for yet another operation, taking along our high school senior son and his then-girlfriend to spend their spring break exploring LA together. Little did we know that he would wind up spending several years in the LA area.

            Some people who lose hearing at 18 crawl into a hole, but she never slowed down. As soon as her ABI was turned on, she went to DC for the summer for a crash course in ASL at Gallaudet, going for long runs all over the nation’s capital, and then transferred to RIT/NTID at Rochester. She never really moved back home after that. The next summer she worked at Blue Ridge YMCA Assembly in NC, the following summer at YMCA of the Rockies in Colorado, then at a camp in Pennsylvania, followed by a summer in school at Rochester. She never slowed down in her running, completing several marathons. On a Campus Crusade for Christ spring break trip, she connected with a great guy who was supposed to interpret for the deaf girl. He said she didn’t need help but they had fun. He proposed at the finish line of her first triathlon this summer, and a couple of months later they completed a Half Ironman Triathlon together. (How can anyone ride 56 miles on a bike with no balance nerves?) Drilling daily on speech recognition with her ABI, she now has over 90% speech recognition without seeing the speaker using the ABI alone, and we can have telephone conversations again.

            My little girl who taught herself to hop on one foot despite lack of balance when she was three, and who drove herself to the Association of Late Deafened Adults when she was a newly deaf high school senior, has no “quit” in her.

She is my hero.

           

Gettin' high (the legal kind) - By: Anne S.

I got the idea to write about this when I should have been going to sleep, last night, so around 2am, with the lights turned off, while laying in bed, I wrote this, on my cell phone.  (This is me intertwined into feelings I have about how others view my running, in general, a perspective often ignored.)  I read it again when I woke up and still liked it, so here it is...

Some say this kind of high is crazy
Some say a weedless high is wild
Many say it cannot be
And its actin' like a child

What is this high?
Yes, I say- it can be
It is rare and most don't understand
Runnin' up the hills-  it can be.

I got mud and dirt splattered
all over me and I'm sweatin'
and my heart is fast beatin'.
I have to rush to a meetin'

Who you meetin' with?
My Lord, my God, my Savior-
I like chattin' with the big guy
While I'm runnin' some more

It makes everything worldly drift away
My worries, fears, and stress
Gettin' high, runnin' through the trees
Wearin' a smile on my face

I think about Him and I know
Everything is gonna be alright,
When I trust in Him,
To make my days so bright.

Where'd it come from?
What is that feelin' high?
I told ya most people don't understand.
They think its a little white lie.

Some say I don't feel pain,
When I get high like that.
Its not a drug though.
Raw brains can do that.

People see me runnin'
Mile after mile just flies on by
Always smilin' real big-
I promise the high isn't a lie.