Showing posts with label inspiration. Show all posts
Showing posts with label inspiration. Show all posts

Sunday, December 4, 2011

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!

Monday, November 7, 2011

My first 50k = 31 Miles ... Mendon Ponds Park on Nov. 5, 2011

‎"I never feel more alive than when I'm in great pain, struggling against insurmountable odds and untold adversity. Hardship? Suffering? Bring it! I've said it before and I've come to believe it: There's magic in misery." - Dean Karnazes 
(I liked this quote, but honestly he is just talking, since Dean can't feel any pain!)
 Mendon Ponds Park, Rochester, NY
November 5, 2011
The Mendon Ponds 50k race...
50k runners had to do the 10k loop- 5 times!  There was also races here the same day that began at 9:30 for a 5k, 10k, and 20k. 50k race began at 8:00am.


(A photo essay... There were a lot more pictures but I only selected a few of them.)


I did the 20k at this race in 2009 and figured I'll do it again (last year, I was at NYC Marathon, the same weekend.) I was filling out the registration and saw there is ALSO a 50k race! I thought to myself "I can do that... hmm, what if it snows? ...I don't want to run THAT far in bad weather! ... What if I'd rather sleep in that morning?  What if..."  RIT Running Club informed me that I needed to sign up a couple of weeks in advance, to credit it towards club donations, so I agreed and signed up. I paid the $20 entry fee, still thinking if it snows or cold rain, I can switch to the 20k and just lose $5.... The weather was basically perfect, although I can admit the longest training run I'd done in the month prior to it was 18 miles...
This was the START line for the race... amusing because start line signs for races are generally a good bit larger. Western NY Ultras wanted to do it differently! 
A view of a couple of people on top of the hill, from the starting line...
55 people came out for the start of this race... 49  people finished this race...
Near the end of first loop, sporting my awesome sweatshirt from Sehgahunda Trail Marathon, from May 2011. It was 26 degrees at 8:00am but warmed to about 48 by the time I finished, and the sun was out through the day. 
...This was when I started telling the photographer that there was a golden back that a way. (turns out it was his dog.) ...I'm used to seeing deer along a trail, but I had just been getting into my runner high, when a gold retriever with came dashing through the woods and across the trail!


 Blazing a hill on the course during my 2nd or 3rd loop... that hill is a LOT tougher than it appears to be, due to being loose small rocks and dried dirt.
Thank goodness... my ankles are still attached...


A pretty photo of some of the race trail. It was some wide carriage like trails and some very narrow single-track trails. 


This is me finishing my 3rd loop, when I decided  I had warmed up enough to ditch the wind-breaker.


This is me finishing my 4th loop...


This man is asking if I am done and I said I still have ONE more loop!


Beginning my 5th loop... ouch :o)


Wow, there's so few people there that 

the birds became the main attraction.


More birds...


There were benches sort of like these scattered in random places, along the trails of the race course (as well as equestrian horses and couples young and old- enjoying walks) ... When you are running ALONE for 98% of that 31.5 miles, these benches can play mind games... wanna rest or will you keep running? (I never touched any of them, but I'm just saying it was tempting, on 4th and 5th loop.)


Striking a "Prefontaine pose" as my friend referred to it as, while I finish for last place, which is the hardest place. (I did however win my age group though and I was the youngest female finisher, only female finisher under 30!)


I finished in 8 hours, 24 minutes, and 9 seconds.  My legs were just totally killing me, especially the way that my left leg was getting mad at me, for my mind making it do double the work, after my right leg decided to basically go into fail-mode, by the 2nd loop.  (I'm having surgery in 3 weeks for a tumor on my right femoral nerve, and it has been causing great deal of weakness to that leg.  It is the hope of me and my doctor that the muscle there will be able to regain some strength, with work of course, after the tumor is removed.) 
Time for a 6th loop, eh?









Getting my finisher's medal
<-- Food that way (the little sign says "soup & bagels"!)







Thursday, October 13, 2011

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



Wednesday, October 12, 2011

My Experience with NF2



My name is Bonnie, I'm 24 years old, and I was diagnosed with NF2 when I was twelve.






I was in the midst of puberty, that awful, confusing period where things just start happening to your body and you have no idea how to stop it or control it. Puberty hit me pretty hard. My hair was frizzy and I needed braces and I just had that feeling and look of awkwardness. While the other girls in my grade all seemed to be perfect, with shiny hair and straight smiles, I was the freak with Sideshow Bob hair.






As if puberty isn't bad enough, not long after I got my first period, I started experiencing discomfort, twinges mostly, in my right thigh. We were on vacation at the time and I mostly ignored them, thinking I had pulled a muscle in gym. Eventually, though, the twinges became less annoying and more debilitating and I told my parents. I was taken to a doctor, where he diagnosed me with scoliosis and prescribed an MRI.






I was terrified. I was twelve years old and my mom patiently explained to me that I would be going in a tube for an hour that was loud and it seemed like the end of the world. To me, my first MRI experience felt like being trapped in a coffin--a white, incredibly LOUD, coffin. The only upside was at least I got to listen to music.






A few weeks later, the doctor called my parents with a diagnosis. I had neurofibromatosis type 2, or NF2, as us cool kids call it. I didn't understand the connotations at first. My parents sat me down and explained but all I heard was a lot of medical jargon that made no sense to my addled preteen mind. I just wanted to watch Buffy the Vampire Slayer, thank you.






It wasn't until a year later that the reality of the situation hit me. I was 13, we were in the pediatrician's office for a checkup, and my dad mentioned I had tumors. In my mind, tumors equaled certain death. I cried all night until I was reassured that they were benign and weren't terminal and as long as they were watched closely, I would be fine.






I had my first NF2-related surgery that year. Previously, my only two experiences with the hospital was when I was 3 and had to get my appendix out and when I was 9 and 30 lb weights fell on my fingers, requiring surgery. So this was a pretty big deal for me. I had to have spinal surgery, as one of the fourteen tumors there was pressing on my nerve, causing pain. I was in the 7th grade and I had to be homeschooled for 3 months. At first, this seemed, well, awesome. I wouldn't have to wake up at 6 am anymore! No more immature classmates throwing stuff at me and making fun of me for being awkward. Success!






After awhile, though, this situation became quite lonely. I was in the hospital for a week recuperating from surgery. My roommate was an 8 year old boy who had just had brain surgery. It was terrifying for me. My mom stayed with me the entire time, sleeping in a hard-backed nylon chair. I was 13 and the idea of staying in the big, bad hospital alone was unfathomable. This was Columbia Presbyterian, a hospital that would come to mean hell in my eyes.






As the years went on, I needed to have a few more surgeries, but the NF was mostly an annoyance. At 14, I had my first brain surgery, which took the hearing from my right ear. THe doctors said it would come back eventually, which obviously never transpired. I would have to miss a lot of classes because I wasn't feeling well, or I had a doctor's appointment in the City, but other than that, life was relatively normal.






It wasn't until after I graduated that things took a turn for the worse. I had spinal surgery right after graduation and, a month later, I came down with meningitis as a direct result, an infection. That took the hearing in my other ear. Suddenly I was 18 and deaf. I couldn't hear my friends when they would call on the phone to check up on me. I couldn't hear the doctors. I couldn't hear music. My entire life was derailed.






While I was at the hospital, there was a lot of screw-ups. For 4 days, the doctors had no idea what was wrong with me so I remained in the ER all that time. When they finally figured it out, I was, among other things, forced to wake up at 2am for a CT scan that, as it turns out, I didn;'t need; the results weren't given to us until n oon the following day, after my dad complained countless times. I had a pick line inserted (like an IV inside the body) and I was told I would be under anasthesia and not to eat all day. I didn't, and no anasthesia. My back kept opening up , leaking spinal fluid, because they told me nhot to lay on anything hard then promptly put me on a cold, HARD, metal examining table.






My parents wanted to sue for malpractice. Our lawyer said we didn't have a case so we just switched hospitals. I now go to NYU Medical Center. My doctor is John Roland and he's been caring for me for the past six years.






I have an ABI, but it doesn't work; it abruptly quit on me 3 weeks after I got it. For 5 years, I pretty much did nothing but laze around the house, crying because a lot of my friends had abandoned me, and I felt very alone. Then came RIT.






I was 23 and a Freshman at RIT/NTID, the National Instutite for the Deaf. Suddenly, I had so many experiences that were lacking in my life before. I made friends. I fell in love (with an awful excuse for a human being but that is neither here nor there). But still, the NF haunted me. In 2008, I had major brain surgery to remove a tumor and, as the brain controls everything, for months I couldn't even walk myself. I had to use a walker, a wheelchair. My hand shook terribly. Now I have mostly recovered but I still have issues with balance. I trip over air, and not in that adorably klutzy Twilightish way either. I can't walk in a straight line, making me appear intoxicated all the time. the vision in my right eye is blurry and the eye is very sensitive. Just the slightest irritation will turn it beat red. It...well, it sucks.






My biggest fear is that I won't find someone to share my life with because of my condition. My last boyfriend said he understood then did everything wrong and couldn't cope. I'm 24 and most of my friends are either engaged, married, and/or parents, and I don't want to miss out on all of those wonderful things because of the NF. Most people have large goals--to be CEO of a company or have riches and fame. All I want...is to be happy.

Tuesday, October 11, 2011

Thank you...

Thank you to the father who took me to that first cross country practice at 6:30am and who sat in his car, watching me struggle to run half a lap on the track.

Thank you to the mother who has always been my #1 cheerleader, but I know she had some doubt and fear about me finishing my first marathon.

Thank you to the student who once told me that he didn't think I would still be able to ride a bike, due to my loss of balance. That week I bought a cheap new bike.

Thank you to the NTID faculty person who I understood to have had told me that she thought I was too smart for those classes.

Thank you to all of the coaches I've had through six years of cross country and three years of track, but I thank one most of all, my first running coach.

Thank you to the endurance team that has supported me through everything, even though we are too spread apart to actually train together.

Thank you to the doctor who took some junk out of my back, sewed me up, asked how I was feeling and laughed when I said okay and then puked on his shoes.

Thank you to the friend who I met through facebook.com, before I came to RIT, and helped me realize who I am, even if she was blunt or harsh, I love you.

Thank you to the running club that patiently waits for every single person to finish every group training run and every race.

Thank you to the wonderful family who has opened their home to me and a group of amazing young ladies, numerous times, even though I'm always causing trouble.

Thank you to the NF doctor at Harvard who told me that I really should not swim at all, especially in open waters, due to my loss of balance. With caution, I ignored.

Thank you to my long time best friend, who has always been there for me, through the thick and the thin.

Thank you to the teacher who when I brought in a 23-page memoir draft for a 15-page assignment, told me I ought to write book, but I basically need to start over.

Thank you to the random people who have asked me how far I've ever run and when they get an answer, their jaws hit the floor and they called me insane.

Thank you to the doctors who have dealt with me, cut open my head - on numerous occasions, and gave me my ABI, so I can "hear" again.

Thank you to the wonder boy, my fiance, who always makes me feel like the most beautiful woman and loves me no matter what.

Thank you to everyone else who has made any impact on my life.

Thank you to God for making my life wonderful and continuing to do so!

Friday, October 7, 2011

My World Without Sound

I live my life in a kind of isolation, a nothingness. I see things
that aren't meant to be seen. My fifth sense has been snatched
away from me, without warning, without preamble. Growing up
all my life with sound, children laughing, birds singing, waves crashing
along the shoreline, only for it all to be taken away. I am lost,
I grieve as if I have witnessed someone close to me slowly perish. For years, I
had no control, over myself, over my life, over anything. I was simply forced
to watch while everything I knew, everything I'd once taken for granted, was taken away.
It is my world without sound. I "hear" things that aren't really there, memories,
recollections of how it should be, but isn't. As I drive in a car, I see a
neighborhood boy bouncing a basketball. I hear the thump-thump as the
ball smacks against the concrete, but it is not really there. When the dog barks,
I "hear" it, but it is not really there. When a child laughs, so innocent, I "hear" it,
but it is not really there. My world without sound. I would do anything, give anything
to hear the waves crash along the shore again.

Wednesday, October 5, 2011

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.

Monday, October 3, 2011

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 7th and 8th 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 80th 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.
           

Sunday, October 2, 2011

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...)

Zenith

I wrote this poem in 2008, it is about keeping my faith and overcoming obstacles.

Zenith

The road is the path,
Where it leads me
From foot to foot
I will take it.

Many summits and canyons
Will come on my course
Challenging me so many times,
I will run them all.

Never looking back
Eyes looking on the horizon
Keeping my measure
I move onward.

In many ways
The people I meet
I will always keep
In my heart.

A myriad of crossroads to choose
The ones I adopt
Have reasons to be journeyed
To continue the legacy of the road

Friday, September 30, 2011

Girl's Best Friend...

I first began running when I was 15 years old. Since then, running has been a perpetual part of who I am....it is where I seek shelter from the challenges of life and where I find bliss and serenity.
Through various phases of my life, running has been a constant. Like a best friend, it is always there to provide comfort and pride! I have never felt regret after a run; running has never let me down. I believe in the run because I know that no matter what I am facing, it will provide clarity and peace! 
I run to celebrate, I run to mourn. I run to forget, I run to remember, I run to relieve stress, I run to eat cookies and anything else. I run because it feels good, I run because it hurts. 
I run to help find a cure for NF! 
I may not always like to run but I will always love it and believe!