THE CHOROIDEREMIA RESEARCH FOUNDATION

Monday, January 16, 2012

1 down 11 to go!! I finished the Arizona Marathon!!!

Writing this in a car. I had stated this blog last night and shortly after felt the incredible need for not only rest, but sleep. Didn't do my usual routine of brushing, flossing, Listerine, eye vitamins. I just closed my eyes. And that was that. Woke up a couple times during the night. I was at a motel 6 next to a railroad so it wasn't the quietest place to stay. No matter, I had some of the deepest sleep I can remember. I'm sure I dreamt, but of what, I have no idea. I'm not usually good at remembering dreams. They seem to drip through my memory like water through fingers.
The cab ride was short and sweet to the Motel. The final price was 11 or 12 bucks but theres a $16 minimum from the airport. Off to a great start.

On Friday after arriving in phoenix, I checked in with motel 6. When I made my reservation for the room I requested a room on the second floor. I know what its like to have people walk above me and I don't like it. It affects my sleep. And I knew I'd need some the next night. Even though I made the request online months before they had no room for me on the second floor. Ok, I'll need to change rooms tomorrow though.

I checked in to my crummy first floor room, complete with a tube tv, drippy faucet in the sink and lack of shampoo. That's what you get for $45.99 a night.

That's ok, because I got a response from one of the 2 dozen local Arizona reporters I emailed 2 days earlier. She loved my story and wanted to meet me and interview me right away. Great!

Elizabeth Erwin was running herself this coming Sunday doing the half marathon, which was a different course than the one I was taking. She was a one woman army. She drove up in a KPHO 5 CBS van by herself. She pointed out a good shady spot for me to stand while she opened her van doors and dug around for camera equipment. She pulled out a tripod, set it up and mounted a camera, brought a lav mic to me and asked if I could hide the wire under my shirt. She was incredibly pleasant and frantic at the same time.

It looked like she was set up. She stood behind the camera and began her questions. She looked at her readings on the camera almost every time I was answering her question, but I could tell she was trying not to. I was amazed she had no camera man or even a driver to help her out. After several questions she set herself up in front of the camera to make it look like she had a camera man. It was quite impressive actually. She took some close up shots of my hat, shoes and cane and I grabbed a quick pic with her she wished me luck and was off to who knows where. The whole thing took ten minutes I'd say. She said the piece would air at ten that night. Cool!

HERE IT IS...

The rock n roll marathon had been advertising a concert that night at cityscape. I had planned to attend. But I also knew I wanted to get over to the Torch Improv theatre that night too. I was hoping to do both.

The said online the doors opened at 430. So I was. There not ling after that. I took a cab. And cabs ain't cheap in AZ. I was walking around outside where the concert was going to be taking place. It's a band I never heard of but they also advertised food. What else did I have to do? Everybody seemed to still be setting up and getting ready. Setting up tables, sound checks on stage. Strangely there was booth where a guy was smoking a cigar, with good reason, he was selling cigars. really?! Cigars? Isn't this a concert for marathon runners?

I floated around and tried to waste some time. And after over an hour of barely anything changing I said screw this. And I hoped in a cab over to the Torch theatre. I knew they had a 7 pm show that night and I could grab a bite to eat around there before the show.

The theatre is a modest very cool black box type theatre. I immediately felt at home. Maybe it was because of all the blackbox theaters I've been around the last 15 years. The ticket guy, Shane, pointed out a place to eat across the street. I had about 45 minutes to kill so off I went.

After drinking a beer I'd never heard of and a cup of white bean chili with chips I was full. I watch the 7 pm show where. Group of improvisors encourage audience members to cut up newspaper clippings they supply and tack them to a board on stage before the start of the show. I put up three articles. The improvisors grab an article at random and read all of, itt seems, of the article to the audience. That then inspires scenes. Several articles were read within the hour.great idea. Great fun.

I talked with jose who'd I'd been in contact with on twitter.he's a founder of the theatre and runs the twitter account and has been hugely helpful tweeting about my race and even volunteered to try to get some footage of me running in the race. What a great guy! To make him extra great he said he'd drive me back to my motel so I didn't have to get yet another expensive cab. So I watched his 2 person show, which I enjoyed greatly, and he gave me a lift. Thanks Jose!!

I made it back to the motel in time to see me being advertised on tv fir the upcoming news. I watched the 2 minute piece and I liked it overall. Would've liked the website, wwwcurechm.org, up there but ok. Still good stuff.

I has to get to bed ASAP, because I was getting up at 5am to get me set for Sunday.

Saturday my alarm went off at 5am sharp. I did mot wake before like I sometimes do. I pulled myself out of bed and did, what I've been doing a lot of, and that's jumping on the social networks and emails. Reading encouragement from others and posting about myself and the latest with me ;)

I tried to find the best breakfast place in the area and, sadly, it was a mcdonalds. I have been doing great the last 2 1/2 years avoiding mcdonalds. I do look at them as a big contributor to poor health in this country and now all over the world because they have spread to their countries..... But I wanted some eggs so I took the very cold walk from my motel to there. It was about 6 am and still dark.

Afterwards I wasted. Lot of time watching the office on Netflix streaming but the wifi quality in the motel was not great so Michael Scott and the Office people ended up looking like claymation characters.

But I got the call from Luis that my new room on the second floor was ready. I packed then unpacked in the new room.

took a break from writing in the car and now im home. this blog is becoming more epic than i planned. if youre still reading i admire your dedication :)

After packing the next step was to wait for Patrick and John. Pat and John are a couple guys from LA helping me to document my races. They also help drive me around when I need it, which I did. They brought me to the airport to pick up Janelle. Janelle is my guide for Arizona. She was also my guide for the Chicago marathon I did. She's also married to my cousin, Keith. I keep describing her as Wonder Woman. She is always doing some crazy endurance challenge. She s a great guide.

We got her stuff dropped off at the fancy Motel 6 and headed off to the Expo. I met a very nice woman that saw my Dr Drew appearance and weve exchanged hellos on Facebook. :) But we needed carbs and needed them quick. It was kind of a trek to find Z Pizza, is what we settled on.

We settle down and wait for our meal outside and minutes later theres a tap on my shoulder and a pretty and familiar voice said something to me i wish i could remember. Something like "any room at this table?" or "Hey dont i know you?" something like that. And to my great surprise it was the prettiest face ive ever seen in my life. My girlfriend, Deborah. She drove all day from LA to surprise me. She had worked the day and night before and thats why she wasnt set to come with me originally I was totally blown away. Not many people surprise me.

We ALL sat and ate and at least Janelle and I over loaded on carbs. Its about 6pm by then and im already thinking of going to sleep. Deb and I get in the room and I lay down on my heating pad and try to settle my mind as best i can. I dosed off watching tv and the woke up and changed positions to sleep, and turned the tv off. Bit then my mind was racing a bit. It did that for at least an hour before i fell back to sleep. thats at about 10pm.

Marathon day... January 15th 2012

My eyes popped open at 415 am. And as much as i wanted them to close again, they were wide awake. I grabbed my iPad right next to the bed and did my usual checking up on all the sites I usually do. Tweeting about going to run today. Deb was up too. She didnt too well either. We start getting ready and get Janelle and the guys. Luckily Deb had bought us some breakfast which consisted on bananas, bagels, peanut butter, water and Gatorade. I loaded up my utility belt and we took two cars to the start line. Actually Janelle, Patrick and I were dropped off while John and Deb figured out parking.

It was still dark when we got to the start line. And not nearly as crowded as I was expecting. All the Chicago marathons (2 halves and a full) were BIG and crazy crowded. We had heard the day before that there were only 5,000 people running the full. And 20,000 or so running the half . Both on separate courses so this was going to be different.

We found a piece of concrete in a parking lot to stretch. its a city where we started so grass was non existent from what i could tell.

We got in line close to 730am. That's the set start time. I put my blindfold on said good bye to my girlfriend and folded up my cane. the sun was almost up by now but it looked like it was going to be overcast. I was all set to go. we all were but there kept being announcements of delays. They ended up delaying the race a half an hour. I heard it was cuz of pace truck, i heard it was because of the light rail (train) that ran through the city. Who knows. They finally started. And I crossed the start line at 8:06:14 am. How I run is i hold on to the forearm of my runner. I have tried other ways and that seems to be best for me.

I had a sign on my back "BLIND RUNNER!! with Choroideremia. 1st of 12 marathons in 2012. CURECHM.org"

The race was peppered with people saying really encouraging things to me as they ran by me or vice versa.

Biggest disappointment for me was the amount of pee breaks I took, which was strange because i didn't drink much at all before the race. and most of the breaks were early on. But if that's the worst of it then that's ok. 5 breaks altogether. I told Janelle the plan was to run to the mile marker and then walk for a minute and keep going til the end. It went pretty well. I started feeling like i was running after mile 10. My left shoulder was starting to hurt bad by then, i think because of the tetanus shot i had a few days earlier. By mile 11 I had to change sides. So now i was holding onto to Janelles left forearm with my right hand. That was much better.

I ate Cliff Bloks and fruity jello block that is meant to supply energy, and id fuel up on water and Gatorade. Every so often there were live bands set up to play and massacre covered songs, but mostly they were good :). I only heard about 30 seconds of each of them anyway.

Because there were s few people running was much easier, mentally and physically. Same with the side lines support. Far less people than Chicago so there were big stretches of calm silence which i greatly appreciated. It made the occasional WOOHOOOing that much more meaningful. That was hard for me during the Chicago ones. I was often overwhelmed audibly forthose races. Since i cant see and have to listen for instructions it was a bit crazy. In Chicago I had a bad mental break at about mile 22. After running past mile 20 in Arizona, sure i was tired and feeling soreness in my shoulders, neck and legs but my mind felt strong. I told janelle after mile 22 id like to walk a minute run for 5 and so on. And we did that for a couple miles. And by the time mile 24 rolled around i could feel the finish line and i said no to any more breaks. It was hard and those last two were the hardest ones. There soreness and some sharp pains here and there that would make me make a "ah" or "ugh" sound. But I was so close!!!

Janelle would tell me when we were getting closer and the people were higher in numbers as we got closer. I could hear music, people cheering. Janelle said she saw people with finishers medals. We rounded a corner and Janelle said we were 100 yards away. THe crowds at that point were loud and cheering and it gave me an extra shot of adrenaline and life. I heard an announcer say my name over a PA system and where i was from and what i was doing. That was a surprise too. I crossed the finish at 5:34:42. I purposely wasnt asking about my times as I ran. I didnt want to try to break any records so i can just run without that pressure. BUT it turns out i did beat my record by 3 MINUTES! Not too shabby.

Immediately after crossing the finish I heard the announcer mention the man finishing behind me saying it was his first marathon at age 75. Way to bring me down announcer guy.

I hugged Janelle and thanked her. I got a water and gatorade a bagel a banana, i devoured all of it. I wasnt too sweaty cuz there was a nice steady cooling breeze all day and that sun was mostly covered by clouds. Fantastic running weather.

I took my blindfold off but had to wait to actually open my eyes. That takes some adjustment. But then i got to see my girlfriend and get pics taken and feel that runners high people talk about. I only feel it when its over. :)

Deborah was great. She popped up a few times along the way and gave me a boost in my mood. I'm glad she surprised me.

I hobbled to the car. I called it my Frankenstein walk. The 5 of us piled into Johns tiny 2 door. And drove back to the hotel (deb and john went to get her car). Janelle and i took turns showering and then she had o go and catch her flight back to Maryland. She'll be doing a few more races with me this year. Shes amazing!

Patrick and John drove back to LA shortly after. Pat was driven around on a motorcycle for a lot of the race so he could get footage of me running. And I know Jose from the Torch Theatre was oyt there grabbing some footage too. Thanks to those guys. I cant wait to see it and show people.

Deb and I drove back today. It was a long ride I was very sore and Deb ended up getting sick (she may have allergies? we're not sure). But It was a great experience. I did feel afterwards like "yeah i gotta do that 11 more times." so my victory was short lived. :)

Next Stop Austin, Texas February 19th.

I havent hit my $144,000 goal yet. Maybe you could help? Also still need some press. Know anyone in Austin to help with that?

You can donate at the PayPal button on this page or go to www.curechm.org. Thank you!!

EJ

Friday, January 13, 2012

I will be done running in 48 hours!!! NEW BLOG!!

I'm writing this blog on the 940 am flight out of lax. I gotta write fast it's a short flight to Phoenix Arizona. I put down the Hal higdon, a major runner and marathoner and I'm listening to the raconteurs last album.

I'm thinking about a few things, one is I just learned at the gate waiting for my plane, a guy I knew just died of cancer. His name was mike, and although I didn't know him very well and we never spent much time together, I knew he was a really great guy and talented improvisor and my first teacher when I moved to Chicago three years ago at iO. I was coming in at the tail end of a eight week class, but I felt welcomed. So I'm a bit sad for him and his family and friends and the improv community. He wad a young guy. Nobody deserves that. RIP mike.

My eyes popped open several times during the night, a restless mind nervous about missing the alarm. I didn't of course. I was up a half hour before it even went off. Made some eggs and toast, checked my online social network sights and finished up my packing I started the night before.

I over packed. Wasn't going to check a bag, but I packed so much, I had to. Over did it with running gear; clothes, cliff blocks, jelly belly energy (yum), waterproof tape, my laminated signs I will run with pinned to me, my new running "utility belt" that will hold my water bottles, energy stuff I'll need before and during the race, maybe a phone or wallet. And, of course, my blindfolds. I'll be using two this time. A dark bandana will go on under the giant white cloth I've used in past races. The bandana is a new edition. We'll see how that works out.

I'm excited..... Really.... I am. Ok sure, I'm nervous. Mostly of getting injured. But I should be ok, if I don't try to show off. I gotta listen to my common sense and my body. I'm not trying to break any records (but it would be nice to do better than my last time of 5 hours 37 min and seconds that I forget.

But really I have 7 hours from the last person crossing the start line to finish according to the rules. Plenty of time.

I've already gotten way more press and attention than I did for Chicago. So we are off to a fantastic start. Already raised over $20,000 since announced this in the summer. A long way to go and almost a whole year to get there.

I said goodbye to my sleepy, yet shockingly beautiful, girlfriend when my ride came. I'll be able to talk to her on my new iPhone. Upgraded from my piece of shit sprint flip phone, thank god!

I'm sure it'll be really emotional this whole year for me. Just the support I've been getting through Facebook, emails, twitter, texts and actually voice to voice and face to face interactions have been incredible and so moving for me. Puts a smile on my face every time.

Whenever I tell strangers or new people what I'm doing their reactions are great and they're usually shocked. I'm accused of being crazy and then they wish me the best of luck.

Maybe I am crazy. Maybe I'll contact Guinness. What's the record for miles run in marathons blindfolded? There's got be a category right? Maybe they'll make a new category :)

I'll be in touch. Follow me.
@ejscott
@12marathons2012

Donate here on the blogspot ...
Www.ejcurechm.blogspot.com
Or www.curechm.org

Even your loose change can make a difference and please retweet or post or email or whatever you can do. Also still looking for sponsorship and press. Thank you. We are about to land.

Ej