THE CHOROIDEREMIA RESEARCH FOUNDATION

Saturday, November 10, 2012

New York Run Anyway Marathon in Central Park!! DONE!! 11 down 1 to go!!

November 6th 2012. Today is my 37th birthday. I just took off from Milwaukee airport for a layover from laguardia. I'm sitting inthe plane where I seem to get the bulk of my blogging done.  Deborah is sitting next to me giving me kisses and saying "happy birthday" every so often. 2 days ago I ran my 11th marathon of the year.

It was a go. It was on. It was happening! The mayor himself said so. Deb and I flew out to new York on november 1st and I was getting ready to run the famed new York 5 borough marathon that's been going since 1970 I think. Frankenstorm, sandy came and made its horrible mark, but people started rebuilding and getting their lives back together. Lives were taken though. I heard a heartbreaking story of a mother with her two children walking away from an abandoned useless car inthe middle of a flooded road where aware or something took the children out of the woman's arms. Their bodies were found later.

My family was lucky. My brother and his fiancée who. Live in Rockville center. I don't think ever lost power in their apartment. If they did it was brief. My parents lost theirs along with my sister and her family living close by. Both have generators which made staying In their houses possible. My parents got their power back officially 6 days later, and to my knowledge as of now, my sister still has no power. Except for the generator,

Staten island seems to have been hit the hardest. At least in new York. I don't know much else about the rest of the east coast. Staten island has been the start line of the new York marathon for many years. Before that I heard that the original new York marathon was at central park. Just running around the park over and over again.

Deb and I got word from Anderson Coopers day time talk show that they wanted deb and I on the day after the race. I was psyched! I'm a big Anderson fan since that tv show the Mole. It was like a spy competition show. It was pretty cool.

Thursday
Deb and I flew in with surprisingly no problems. In fact getting into new York was easier than a lot of other times I've flown in. I even had a stop over in st Louis. Everything was on time and we even had elbow room on both flights. When debs dad picked us up, we didn't even hit any traffic. I was being told by everybody we were not getting to new York easily. That went fine.

Figuring out how to get to the start line of the race was becoming tricky. My start time was set for 10:55am. But because the subways were all flooded I was going to have to come up witha plan b or plan c. I was going to take a subway to manhattan to take the ferry to staten island. Then it became debs dad, driving me to manhattan very early to get a shuttle at times square that would bring me to staten island. But I'd have to be up at 4 or 5 am for that plan. This was making mevery nervous.

Friday
Debs mom was celebrating her 65th birthday and throwing a party at their house in Brooklyn. A few people had to cancel because things were still complicated for getting to places. Gas was and is a huge issue. Long lines of people holding gas cans and other lines of people in their cars waiting for hours. During the day the family started making food, cleaning around the house, and prepping for the birthday party. Cathy, debs mom, is a sweet woman who couldn't be more supportive of what I'm doing this year. She combined her birthday and also made it a fundraiser for my marathon. She a had a display of some articles and pictures of my year so far, and the current men's fitness magazine that I have a 4 page spread in.

Before the party there seemed to be some down time. I was told by Jason Kaplan, a guy I met over the summer who works on thehoward stern show, mentioned a dr who themed bar  in Brooklyn he always wanted to go to. That sounded fun. Since then I've been watching dr who and I'm about 2 1/2 seasons in. Turns out that bar was pretty close to where I was staying. I mentioned the bar to debs brother, Chris, and he was game for checking it out.

On the way over I was feeling my phone vibrate with text messages. I ignored them until I got to the bar. It's a small bar called the Way Station. The  " on the show is a time machine disguised as an old police phone booth from England. But in the bar you ope the door and it's the bathroom. It wasn't as dr who heavy as I was expecting and hoping but it was still a pretty cool bar. With dr who themed drink specials and even the master screwdriver the doctor uses for people that pose for pictures. Its not the real screwdriver. But it was fun.

I checked my messages in the bathroom which was decorated more like what I was expecting. Complete with signed message form mattsmith, the current doctor, and a painted picture of the doctors biggest enemy, the Dalleks. I hate the Dalleks btw. Sorry. And a painted doctor with a question mark over a face. The texts said the marathon was cancelled. It's about 6pm Friday night. My heart sank, my stomach dropped. I looked up an online article and sure enough it was cancelled. Due to a huge backlash of people demanding that the resources be used to help the victims of Sandy.

I imagined all the pool euro out of town and other countries that were screwed, the businesses that were closed all week that were hoping for a busy day on Sunday, the money that was going to be put back into the city, not to mention the hundreds of charities that wee being represented and the thousands or millions that those charities were not going to get now. Including my own Choroideremia research foundation.

Understandably staten island wasn't going to be a good place to start the race, but instead of limiting resources and finding other options, things were dropped. The mayor insisting still that having the marathon wouldn't have taken away resources from those who need it. I don't know what's true and what's not. It just seemed to me additional people were losing out. Keep in mind I have done very little research on this. And if I wrong I'm wrong. Not the first time, not the last time.

I knew I needed to run anyway. I started thinking about other marathons to run. I looked some up online, I was thinking georgia, Pennsylvania, north carolina something. But I was also thinking of running 26.2 miles in new York as well. Because I said I was going to do it. When I say something I really do try to follow through. Especially with something like this. For charity!

Chris and I started brain storming at the bar. He had a idea of running around a bike path that goes around manhattan. I thought that sounded good. I made sure my assigned guides for the marathon were still up for running with me. My cousin Jennifer was flying in the next day to run with me. The guides were all in! I told Jen to stay home just in case something else happened that further complicated things. My decision was quickly made. I'm running!

I started tweeting and facebooking and I got a message from a couple people saying I shouldnt run, implying its disrespectful to the sandy victims. My whole message is don't quit, no excuses, be strong. I decided to run for  sandy victims too. but It turns out I was not the only person thinking these things.

Chris and I met up with a friend of his that just flew in hours before for the marathon. We al, walked back to the houser the party. People were apologizing to me because they heard the marathon got cancelled. I'm running anyway. Still working out the details. I hung out at the party and even made an announcement to people that I was running regardless. Some told me I should run central park. And that was the original route. For the new marathon, central park is the finish line.

I went to bed still working out details.

Saturday

I read online I could still get my shirt and bib at the expo. Debs dad brought me and deb to the expo at javitz center. It was a very dour expo. Lots of opportunities to give to sandy victims. Asics was having a sale where 100% of sales went to sandy relief.  First up was getting my bib. The woman there was telling us under her breath that some people were forming a group to run in Central Park called Run Anyway and that we should look it up on facebook.

I got my shirt, bib and some extra shirts and pants.  It was going to be a nice day on Sunday but cold. I asked and formation desk about getting my medal, a refund for the registration fee, and I was curious about the $2500 that debs parents paid to a charity called Community Access to getme in the race after I didn't get in through the lottery. Debs dad already said he doesn't want that money back. But that almost $3000 plus airfare to get me to run in the new York city marathon. The woman said she had no information about anything. and that I should check the website in a few days. Um.... Okaaaayyyy......

I looked up Run Anyway. It was looking great! Lots of people that were running for Charities standing by their commitment and raising money, food, clothes for sandy relief too. They are going to start at the finish line that is still up and run counterclockwise 4 1/3 times. Each lap is just over 6 miles. The path was going to be much hillier than the race thru the 5 boroughs but oh we'll. It didn't look too bad. I'm sure I'll be fine. I want to start at 10:55. My original start time. The Run Anyway people were meeting at 8 and start at 9. So I was going to be late.

I got my stuff ready, ate my pasta dinner. And got my head together as best as I  could.

Sunday

The Woll family was in full effect! Thank god! Chris was going to be my camera man, debs parents were going to take a spot on the course armed with fluids and deb and Chris and Chris's girlfriend was going to be on the other end also armed with fluids. I got to the race and saw hundreds of runners all over the area. There were porta potties set up up at the original finish line surrounded by bleachers. It was happening! I did my stretching, found my guides. Eric, Alia and their friend Ryan and was ready to go. Deb was timing me and I figured why wait til 10:55 lets just do it. According to my watch we started at 1030.

I was so nervous I was going to have a similar experience I had in Chicago with that horrible peeing thing. So I did what the doctor said and hydrated big time. I drank tens of water the night before and that Morning. I was peeing a lot already but at least it was normal pee.

I was able to listen to my iPod, with eminem, pearl jam, green day, mighty bosstones, flogging molly, jay z, linkin parkland lots of other great music. Since it was such a smaller race. (47,000 originally slated to run, 40,000 were in the city when Bloomberg cancelled it). I thought running with music would be ok.

We hit some hills early on. We ran up them keeping to my run 10 min, walk 1 min pace. They didn't seem so bad the first time around. It was cold though. My shirts got dampened with sweat but I had a spare in my belt. I changed my shirt and peed at mile 6 at the finish/start line. But it didn't stay dry for long. The second time around I ran up the hills again but it did not go as easy the second time. I was nervous about expelling too much energy too soon.

Having my Woll supporters there were great. And have guides was awesome. Alia guided me the whole time. And Eric would grab my empty bottles and get them refilled while I kept running, Eric and Ryan would each ask people to move over or watch out BLIND RUNNER!

I was Not going very fast and around mile 14 my legs were really feeling it. I woke up that morning with a soreness in my back I wasn't crazy about and it was throbbing a bit. But my hip flexors were good and my bladder situation was good. Alia and Eric too some Advil and I asked for some too. Shortly after my muscles started feeling better and so was my spirits. I passed by debs parents at their spot 4 times, debs spot with her bro and his girlfriend 4 times and it was time to get to that finish line.

People were telling us we were close to finishing for hours. This time it was going to be true. There were  few people left on the course. But basically it was over for most. They were even taking down the finish line and bleachers and we had to run around them to get to the other finish line.

It felt good to finish. 6 hours, 5 minutes, 11 seconds. When I took my blindfold off it was almost dark. The sun was gone. Just speckles of color left in the sky. after a few pictures and thank hous to my awesome guides it was time to go. I wish I could've hung out with them at a bar or restaurant or something but we just parted ways.

I asked the wolls if I could get some food for the road. Got some pizza and sat in some traffic on the way back to Brooklyn. It was a relaxing night. By the time we got back it was time for bed forme. Deb and I watched some Avengers on my iPad until she fell asleep then I switched over to boardwalk empire season 1 which I'm greatly enjoying.

Deb had some shirts made for me and our families. She's the best. I'm lucky to have her.

Monday

Deb and I were supposed to go on Anderson Monday, but once the marathon got cancelled they cancelled us. But the Jeff Probst show became interested in us. They want us on Wednesday which meant more schedule changes. November 6th I was gong to LNG island to celebrate my birthday and my nephews birthdays. But now I had to change it to Monday.

Was also suppose to do something for the Insider, but that was changing due to the election. So off I went to long  island on the train. early enough to get some hang time with my nephews. They are just about to turn 4 and 8.  Was so excited to see those kids! Theyre great kids!

I watched a movie with them, although the little guy couldn't stay in one place for more than 2 minutes. Deborah came in later and it was pretty relaxed. My brother couldn't make I due to work. But my parents got their power back the day before. had a nice birthday and good dinner. And deb and I  headed back to  Brooklyn on the train.

Tuesday

My 37th birthday. Woke up went with deb to meet her friend Charlie at a restaurant for breakfast. And now I'm on a plane. About to watch more boardwalk empire. Deb and I had to change our flight to go on Jeff Probst show tomorrow! It'll air later in the month, but I'm excited to meet the guy! He's the best competition show host out there in my opinion.

So that's it.

One marathon left. Las Vegas December 2nd! Please help me reach my goal. I'm far far behind.
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Thanks so much!

Best
Ej

Friday, November 2, 2012

CHICAGO Marathon DONE!! 10 down 2 to go!!

As the doctor had is index finger 3 knuckles deep in my anus, I thought how did I get here? 

I guess it started back in 2009 when I was living in Chicago. I had recently hit a "bottom" by simply weighing myself on my girlfriends scale after years of avoiding the scale. 260 something. Whoa! What!? I remember as a kid giving my dad a hard time For being 242lbs. Now I have surpassed that and in shorter time. A bit of brainstorming with my lady love, and we came up with getting sponsorship for me to lose weight. I'd ask friends and family to donate either a flat rate or per pound. I thought even if I get a few hundred bucks out of it it'll be good. Initially 60lbs was my goal and somewhere along the way added another 10 lbs. I started the weight losing at 267lbs. Losing 70 would bring me down to under 200. 

It was hard. It was 90% change of diet (I ate salad for possibly the firsttme ever). The weight was dying to get off me. My body was thanking me all along the way. But my lifestyle, socializing took a big hit. I was use to hitting the bars, watching improv shows while having 1, 2 or 10 beers in a night. Then hitting Denny's and eating some of that shit at 3am was not unusual. 

I had already quit smoking a few years before so I had that going for me, but I could swear that put weight on me. Not smoking gave me more time to eat and drink. 

But I was doing it, I was really actually doing what I viewed as impossible. Literally for me impossible. I would watch the biggest loser on tv and think it looks so fucking intense and crazy! 

I was never very active. I played some soccer in elementary school but I thought I sucked and wasn't having fun so bye bye to that. 

When I lived home with my patents in my 20s (yeah I was that guy) I would constantly ask the not to get junk food cuz I couldn't help myself. My mother never took any blame and put it on my dad who did all the food shopping. My mom hates food shopping. I don't really get that but my guess is my dads real intense about it. Using his coupons and making fun of my mom whenever she would try to go food shopping. News flash: it's not fucking rocket science! 

When I was losing the weight in Chicago I realized food is a genuine problem for me. It's always a struggle day to day, meal to meal. Making right choices. Saying no more than saying yes. It's hard. 

Toward the end of my weight loss ( I was averaging 10lbs a month). I lost 60lbs in 6 months. That final 10 was on the horizon. I decided to commit to running a marathon that following October in Chicago. Exercise was hard for me to get into so I made myself commit and told everybody I knew so I would be held accountable. So I joined the gym around the corner from my apartment and off I went. 

Took 2 months to lose that final 10 but I did it. I did what I thought was impossible. And was training for something else now I thought was equally if not more so, impossible. Running 26.2 miles?! Are you fucking serious? Why would anybody do that? I don't get it. Everybody just calm down. 

I wasn't around exercise growing up, sure there was gym class with a bunch of buddies and girls you had crushes on , but really I just viewed that as a free period. And in high school I got out of gym class altogether due to a skin rash I would get when my body would heat up. 

My sister was the most active of us. she was into kick line (a form of dance and cheer leading fusion). And she seemed to not have too many issues with weight or food. My mom always kept her weight at a reasonable number. She seemed to have the capability to not finish a meal and get full early. But us Scott boys: me, my brother and dad, we could finish our plates and fight over who was going to finish theaters of those around us. 

I had to ask an employee of the gym how to use a treadmill and what she recommend I start on. And off I went. That first day I did a walk/jog for about10 minutes. I probably did under a mile. 

9 months later it was October. I had run 2 half marathons in August and in September to give me a sense of what it was going to be like to run with other people, the noise and being guided by someone. Because I'm doing these blindfolded. Did I forget to mention that part? My eye disease, Choroideremia, is not only taking my sight away but while it's doing that it's making lights uncomfortable and unhealthy for me to be around. Thanks Choroideremia you asshole! 

So here I was, blindfolded, going blind, formerly fat (I was probably about 203 for the marathon), ex smoker, no idea what the hell I doing. Can't wait for this to be over and never run again. 

I was able to get local publicity for my run. I was on CBS news, got a write up in the free Red Eye and front page of theChicago tribune. Not bad. I raised $14,000 from that weight loss, also not bad and was still raising more with these marathons. 

I finished that marathon. It was hard, I didn't enjoy most of it. I started crying at mile 22 or so. I finished at around 5:37 (hours, minutes).

I don't know the exact day or the exact time or what was the one thing that made me think of 12 marathons in 12 states in 2012. Maybe because the Chicago one I ran was on 10/10/10, maybe cuz my brother in law bicycled across the country in 35 days for Choroideremia, maybe because Jeff Benelux also a chmer ran marathons, maybe cuz of the publicity I thought I could get, maybe because I just couldn't shake the idea. I already did a bunch of stuff I thought were Impossible and that I'd never do. Maybe this would just be added to that list. Maybe I'm foolish enough to think I could make a difference. Maybe also this is a way for me to deal with going blind. Rather than sit around and wait for it to take over. 

So it I am again. Chicago, two years later. 10/07/12 (not quite as catchy as the first time I ran) but ok. 

I live in LA now but still have some good friends in Chicago. Luckily a couple of them were going out of town for a few days and I was going to have a place to crash. Perfect! My own space for me to focus on the task at hand. My 10th marathon of the year. 

I was nervous about my back as usual. I was able to visit dr tickle, my chiropractor in Chicago I use to go to regularly when I lived there. She gave me the full treatment and I needed it. My back has been a looming force this year. I have a bad back that goes back to my early 20s, luckily its never been an issue during a marathon run. And I'd like to keep it that way. 

I flew in on Wednesday, my flight left crazy late so I arrived crazy late I met up with Dave whose place I was staying at who also gave me Johns keys I was staying at his place too. I dropped my bags off at johns which was pretty close to iO Chicago! My improv theater out there. I was meeting my friends there for a drink and a show. First I met Don at Salt and Pepper diner for a quick bite, then we went over to watch a few improv groups leading up to Carl and the Passions, one of my favorite teams there. Noah said hi to me on his way in (he's on that team) and during one of the other teams he asked if I wanted to play in Carl and the passions! I was psyched! I got never got to play with the before! I had a great time playing. I was a little rusty but I think it went ok. 

After that we waited around to watch TJ and Dave arguably one of the best improv shows and duos of all time.  My friends lee and Rebecca joined don and I. It was a great show. It was cool to see those guys play again. 

The next day I had planned a fundraiser at the Playground theater. My parents were in town (they had been driving around the country the few weeks leading up to Chicago). It was raining a lot that night and was def going to be an issue. Not many people attended but it was a fun show. 3033 a great improv group at iO played and I did Shootin the shit with Sarah Gee, Lisa Linke and Brendan Jennings. All great improvisors who I haven't seen in a long  time. I hadn't been back to Chicago since I moved a year and a half before. 

Only made $200 for the foundation but what a fun way to make it. 

Friday 

I  was moving to Dave's place now. I needed to do as little as possible so I could  
Get to bed early and start getting use to that. Sunday I was going to need to get up very early. I had bench with my folks and grabbed so throw away clothes at salvation army. It was going to be cold for the race. 

I ordered take out and watched some episodes of Fringe I brought with me. 

Saturday 

Was expo day and an opportunity for me to meet my guide Whitney. Whitney was assigned to help me, even thought I had nick who lives in Chicago and ran one of those half marathons with me 2 years prior. Nick had an injury a couple weeks ago and having a back up seemed like a good idea. 

I gave Whitney the rundown. She seemed with it and seasoned. She was training for an 50 mile ultra run so in the morning she was going to ur. To the start line. Wow! Really?!  Ok cool. 

I met up with Paul a reporter for CBS I think. And he ended up doing a really good story on me for the news! Sweet! 

I even got some running in at a local gym. 

I made some pasta for myself and got to bed pretty early. Got about 7 hours I think. Really good. That's a good start. I took a couple ibuprofens before I left. My hip flexors have been bothering me a lot lately especially that week. 

Nick picked me up, drive us downtown to the start of the race. We parked and got wheelchair special treatment. Even though I'm not in a wheelchair I got to hang out in that rent right next to the start. And I get a 9 minute head start. Good news. That usually helps with my time and Stress. 

The start was a bit rocky. Right off the bat I tripped over some guy that cut in front of me. I ran with the shirt I bought at salvation army for maybe a mile. Bad idea though. I over heated and ended up sweaty. And it was cold out so I was freezing. It didn't get any better either. My time was pretty good the first 10k or so. I took a couple Advils at mile 6 but at mile 7 I started getting the weird pee sensation I got in Seattle. Oh no! It's painful, uncomfortable and causes me to not want to run. I told my team what was up and to expect me to stop at every porta potty. But even when I pee almost nothing comes out. I thought for sure it's because of all the ibuprofens I've been taking.  Whitney even mentioned. Maybe I have kidney damage. Shit! I hope not. I still had 19 miles to run for this race. And man did it just suck! 

I tried to listen to music but my iPod when wonky and I stopped using it at mile 10 or so. I did a whole lot of walking. At one point in the porta potty I grabbed my butt cheeks and they were wet and freezing cold. That was probably half way through. But that's how it was the whole time. painful, wet, cold, miserable. I felt bad for my guides. I was not great company. 

We stopped at a burger king just so I could use their bathroom. At least BK is good for something. 

Eventually I finished. With a time of 6:53. My worst time by far. I knew it would be once that bladder thing happened. But I was worried about my kidneys now. And what if I did something to them. This was maybe the 3 rd time it's happened to me during my marathons. 

I met up with my parents and friends and apologized for keeping everybody waiting. They understood. But 10 down! 2 to go! 

That night I stayed in Evanston in hotel. Watched bad tv pilots I downloaded on iTunes and ate pizza. I was feeling better. More normal. 

Monday

Went to dr tickle again, this time my dad went too, to get a tune up. And later that day had a dinner with folks and friends at Calo restaurant in Andersonville where I use to live. Was able to drop by iO and see some armando show and say hi to a few people. But I was wiped and I had an early flight the next morning. 

Tuesday
I flew out of midway but not before losing my very expensive back cushion that fell out of my bag. Man that pissed me off. And the employees there seemed to not give a shit. Whatevs I was excited to get home to see my lady. 

I made an appointment to see a urologist that took my insurance.  He interviewed my, checked my stats, had a guy ultra sound my bladder and kidneys and as a hey how ya doin, it's time for the prostate exam. Yikes! I had the bladder thing a couple years ago when stil living in Chicago and had a prostate exam then too. All good! Now just waiting for blood and urine tests. But the doctor thanks I wasn't hydrated enough. Could be. But I was I thought it was the pills. He said nope. Not with the amount. Was taking. 

So here I am now on a plane to NYC after Frankenstorm Sandy! I'm going to try his advice of hydrating and just drink a ton the day beforehand take a drink at each water stop. And see how it goes. Hopefully the bladder will be Finland my hip flexors will be ok. I've been stretching them a lot lately. They are feeling better.

Wish me luck. Here I go! #11!!

Please give to my goal. I'm only at about $85,000 of my $144,000 goal. Thanks! 
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I'm running 12 marathons in 12 states in 2012 blindfolded!
Www.ejscott.com
Twitter...
@12marathons2012
@ejscott
10 down 2 to go!!
www.ejcurechm.blogspot.com
Next up..... New York City!!! November 4th!