Lots of things were scaring me and mind playing with me before the race. The likelihood of thunder storms, the massive rolling hills in the marathon, what about my body? Is it holding up? The LA marathon took me forever to finish and that was mostly flat. I wanted to have a fundraiser and it was going to happen on Thursday night, thanks to some improv contacts I have in St Louis. But that all changed just 72 hours before we were suppose to hit the stage.
Back in January the great Bill Chott and some others were starting a plan of a big blow out of an improv show/evening for the Choroideremia research foundation. They were doing all the planning which made sense and was a huge help since I don't live in st Louis. But on Monday? Bill sent an email saying we lost the space at the Improv Trick theater due to some Shakespeare rehearsal or something? I don't remember. It doesn't matter we lost the space and bill cancelled the show. I didn't want to cancel the show, I wanted to find another space and a guy named josh was helping me look and a guy I knew from Chicago and lives in st Louis now was helping me get stage time at the Improv Shop. That had great potential! In fact on Tuesday it sounded like a go for the fundraiser to be on Monday now. But less than a day later that changed due to renovations. We were back to not having a space and it wasn't getting any better. Theresa was suppose to be a part of the original fundraiser. I never met her but she contacted me and offered help. She knew I was just trying to have some sort of fundraiser in each city I was going to and her solution was an open mic night. The first one she suggested was Monday, but my flight back was Monday (originally I thought it was Tuesday but I was wrong). She and I and another kind soul would do a short improvised scene and I could talk about what I was doing. That's for Friday night open mic. More on this later. I'm getting ahead of myself.
I flew in around 4 ish. I called the hotel to send a shuttle. The hotel is only a 5 minute drive, but it took about half an hour and a total of two phone calls to get them to come get me. I think that second call did it. I checked in fine and the girl checking me in was set to run the 5k race on Saturday. My marathon was on Sunday. I needed to find a place to eat dinner. There's lots of junk food places around but I was hoping for something better before the big run. I walked a half mile or so to a Denny's which was scary because here are limited sidewalks and half the time I was walking on the side of the road. No street lights by the way. The only lights were from cars and the buildings around it. And it was getting dark. The weather was set to be bad that whole weekend starting Friday. For a guy that can't see well and even worse in darkness this was a bit harrowing. A Denny's menu is 99% unhealthy. The healthy part is highlighted and minimal. I got a chicken noodle soup and apple pecan salad. On my way back to the hotel I stopped in a gas station mini mart to get supplies ; water, snacks, bananas. I made it back to the hotel without being hit by a car, but there was one point that I thought I had turned into a driveway and it was actually the road. Cars flying by me. No harm just got my heart pumping.
I slept in the next day (about 9hours of sleep). Woke up around 8am and started planning the day. John my camera guy said he would leave Chicago (where he was staying) at 7 am and get to me between 11-12. Great. I'll start planning things for around that time. I had a phone interview with Kathleen Nelson from St Louis Post-Dispatch newspaper, that came out on Thursday? I think. I was contacted by Kathleen because she was contacted by Jay Epstein, a man who apparently was moved by my story and wanted to meet. His daughter, 6, has eye issues as well. The name of what she has makes the spelling of Choroideremia seem like C-A-T. But his daughter goes to a place called Delta Gamma Center for Children with Visual Impairments and he was wondering if I'd like to visit there. I thought it would be great to see kids at this place I think would really motivate me. I'm a sucker for kids.
On top of that Marjorie had contacted me from a place called MindsEye on Twitter. And she invited me to come by and be interviewed. MindsEye is a radio station for the blind. My grandfather was blind and always listened to books on tape and the radio. I thought it was a great thing.
Both of these places were a bit out of the way for a guy who doesn't drive anymore and is unfamiliar with the area. So I needed my camera guy to drive me. But he ended up leaving Chicago over an hour later than expected and then he hit traffic. So now he didn't show up until 2pm. I jumped in the car and went over to MindsEye first. The weather was getting bad. Dark clouds, scattered blankets of rain, heavy winds.
(Im on the plane now on my way back to LA.)
We met marjorie and Tom. I asked them some questions about what they do there. It was pretty interesting. They have over 200 volunteers that come in at different times and read. Read newspapers, books, you name it. Met an older gentleman named bob who had just finished reading the comics of a newspaper. He's been doing it for 15 years if I recall correctly. Tom brought me in for about a ten minute interview. And off we went to meet the epsteins at 4 pm ish.
Unfortunately that day there were no classes going on but jay made sure I'd be able to meet his wife, deedee or maybe dede? a former runner herself and their adorable 6 year old daughter Margot. Debbie met with us too. She helps run the place. The outside of the building is nothing special but inside is quite impressive. Beautiful , clean space for kids with vision problems to come and learn Braille and so much more. They had books on bullying and being different. Important nowadays. Some of the hardest years for kids are those middle school years. They were for me anyway. Margot could see without the aid of a cane but from what her mom told me she couldn't see everything all the time. But at least her vision won't get worse. What she has isn't degenerative but it does leave her a bit cross eyed and I think her eyes shake.
She seemed to be having fun there. She showed me a game where you talk into it and it repeats what you say back in a different voice. She got gitty when she was using it and showing it off. There was a dark room with a black light that lit up certain toys, mainly blocks from what I could see. That's so the kids can see it more clearly. A lot of clever things as we walked around. There was a play room that was almost like a workout room complete with a climbing wall to the ceiling, apparently the most popular amongst the kids. I climbed one once just last fall for the first time. And it's pretty exhilarating.
Jay (also a former runner) came late, straight from work. He was overly thankful to me. Saying very kind things to me about what I was doing. The reality of what I'm doing is far less heroic than it's being painted. But I appreciate the kindness none the less. What a sweet family though.
Anyway. It was time to go get Jennifer, my cousin from Syracuse, and my guide for the race back at the hotel. She flew in while I was at delta gamma. The plan was to grab her and go downtown near the bar I was going to be doing my improv show. The show was scheduled for 1030pm and I had a tv news interview the next morning at 6am. This was poor planning on my part, but things got turned around and I was trying to make the best of it, but I was dragging John and Jenny in on it too. And I felt bad about that.
We found a place called hard shell cafe. Interesting place. Don't know if I would recommend it. It was a bit loud, and oddly decorated. Harlequin statues, a fish tank in desperate need of a cleaning, uneven chairs and tables.. Ok whatever lets eat! we were all hungry and tired. By the time we finished it was only about 8pm. We went over to the bar to have a drink and relax, but relaxing maybe wasn't the best idea. The bar seemed small and was empty when we got there. I asked the bartender where the comedy was going to be and she pointed to a space in front of a jukebox. I stated feeling bad for dragging Theresa and her friend that was going to do an improv scene with me it his less than ideal space. With a guy that was beat and mentally maybe just not present. Long story not quite as long, I chickened out and left a voicemail message for Theresa. Minutes later she popped in the bar. She was very kind and understanding and even bought me a drink. I left a stack of pamphlets about my story with her to hand out at the open mic and a guy at the bar heard about what I was doing and handed me $20. That was very cool. The bartender insisted I get on mic and give my "spiel". Ok. That a minute or two and that was that.
Off we go. It was probably about 10ish when we got back to the hotel. John going off to stay with his sister who lived close by. I was asleep by 1030 which was when I was suppose to hit the stage at that bar. The extra time was well used because I was up at about 430am.
Got ready. Washed my hair in the sink and we were out at about 5am. I was suppose to be there by 545. I was going to be interviewed live between 6-7. We got there even earlier. Ksdk 5 (NBC). Only a couple people around working at that time in the morning. Caleigh and Stephanie were meaning their stations at their cubicles. We could here police? Scanners constantly going. I don't what they were working on but they were working very hard. Caleigh was wearing cubs gear which was brave considering the cardinals seem to be very important in st Louis, but the cubs had beaten the cardinals the night before. Since I support chicago I support the cubs :) but in reality I know nothing about sports. I'm no athlete.
We were there very early which lead to waiting around. Finally I was summoned to the studio. What I found maybe most interesting were the cameras they used. Nobody was visibly controlling them. Like they were remote control or something. It was pretty cool. They put me in what I though was a nice waiting area with couches and fake books on a table, but actually it's their interview section. I got mic'd up and waited. While waiting their weather man talked about the weather for the marathon and how dry it's going to turn out to be. I had heard rumors the day be fore that it could've scattered and not as bad as anticipated. I've had rain scares for LA and Austin and now St Louis. It's a real mind screw.
Kelly Jackson couldn't have been more delightful to talk with. And she took a second to take a pic with me. She was very cool. She even recommended a place called Rooster to eat breakfast afterwards. I'm hoping to get a video of the interview. Since it was live I haven't seen it. And I don't really remember what I said.
Rooster was closed when we got to it before 7. It opens at 8. Over An hour to kill. We looked for other places that might be open but there was nothing. There weren't even cars around. I wanted to try to print something out for the Gateway Arch so I thought we could find a kinks or something. The closest was like 20 miles away. Ok so much for that. I even tried calling ksdk to help, but they couldn't. We were starving but decided to kill time and drive some of the course and see how bad the course was and check out some of these hills. We didn't get to the miles that were the big warning signs by what I saw didn't scare me too bad. I was still worried about the weather. Was it going to rain anyway? It was raining quite a bit when we were driving around. Or was it going be too hot? Did I have hydration issues to worry about now? Why can't his be easier? Why can't me, my brother and my nephew not have this disease? Then I could just go home and watch the Soup with my girlfriend.
Rooster was worth the wait. Really good food. I want more, now that I'm thinking about it. But we had to hustle because now we were rushing to the Gateway Arch. I had bought tix online the night before for 930 reservation. I was surprised it was a bigger tourist attraction than I thought. There is even security metal detectors to go through. Really? Ok. After that there's a bit of a museum and and I saw a sign for a theater .there must be some movie about the arch beyond the short one they show before you go up. We were a little late, but it didn't matter. We went on the next tour to the top.
The elevator is interesting. Imagine the egg from Mork and Mindy, but squeeze 5 people in there. John expressed for the first time his fear of tight spaces. Awesome! I can't wait to make fun of him on he elevator. Actually I'm not crazy about that either, but for 4 minutes I can suck it up. It's exactly that long to the top. Me, Jen, John and a couple were in there. On the way up I told them about what I was doing and gave them a pamphlet. When we exited the woman handed the pamphlet back to me. I said she could keep it, but then Jen pointed out that there was money in it. $10 donation. Very sweet.
The top of the arch is a bit tight too. The windows to look out of are small. It was a cloudy day so some of the views were obstructed. It was cool though. I'm glad I went.
The expo was close by so we went to the VIP booth to grab our sweet bibs and shirts! Thanks to a guy named Brian he hooked us up with the VIP stuff. Which meant VIP parking and VIP area before and after the race. Plus he got me to the front of the start line. Which I never got to do before. I was really looking forward to that. The wheelchairs and I would be let go at 655. 5 minutes before the first group. The elites.
We walked around the expo a bit and a woman, Kim, at a table recognized me from that morning. She was really sweet. Her daughter and husband were on the biggest loser a few seasons ago and now write books and are motivational speakers. She told me the family has lost over 400lbs. I mentioned my own weight loss too. She told me to come back to meet Jen and Jay. I said I would. We made our way around the expo and ended up again at the Biggest Loser table. I was able to meet Jen and Jay very briefly. I learned they were doing the marathon but as a relay. And now we follow each other on Twitter :)
I was sort of planning to go on the Anheiser Busch tour. But we were all pretty beat. We skipped it and went back to the hotel. John went off to his sisters, Jen took a nap and I got ready.
I ran 2 miles in the hotel gym. Which were surprisingly not easy. Was my body starting to rebel? Have my legs had enough? Are my muscles all like "Nuh uh, girlfriend!". Why are my muscles talking like that?
While getting ready in my hotel room I got a call from Talia Kaplan. It sounded like she got one of my emails I sent out a couple days before but it also sounded like she didnt know what was going on. She works for KSDK 5 in St Louis and wanted to meet up with me before the marathon. She told me it was her first time covering the marathon and asked me when it started and when it ended. Then she asked my how to pronounce Choroideremia. And when I mentioned I was running blindfolded and 12 marathons all of that sounded like a suprise to her, so I'm not totally sure how she found me.
(I'm finishing this blog now on April 24th at home). The week is getting away from me and writing these takes SOOO long :)
She wanted to meet before hand for a live interview. Meeting before marathons is hard. I have a lot on my mind, I need to stretch and focus up an whats going to happen, and I dont know the area or the unknown, so Im not 100% comfortable meeting before the marathon. But I'm there to get publicity so how can I turn it down? I can't. I said we will try to meet up. And left it at that.
I got to talk with Deborah, my love, and tell her how much I missed her and love her. And vice versa. So that always means a lot.
There was a local italian joint (im forgetting the name) and Jen and I took a cab there. It was fine. Got good write ups online and it served pasta and beer. Thats all I wanted to know. We split a pepperoni pizza and each had a small salad and pasta with meatballs. I had a beer or two and we took a cab back.
It was about 6 or 630pm when I said goodnight to Jen. I went upstairs, listened to some Howard Stern on my Ipad, maybe watched a little TV and went to bed. Probably fell asleep around 8 or 9. Got up around 2am to pee. and had a hard time getting back to sleep. I cant be sure I ever did get back to sleep. I may have faded in and out for a couple of hours and eventually just got up. Again no need for my set alarm. John was suppose to be there by 430am to grab some footage of me but instead he showed at about 445am and by then we (Jen and I) just met with him outside. Pitch black outside and warm!! Surprisingly warm! I havent felt it that warm in any of my marathons so far at that time. I was starting to get scared that it may end up being too hot today. And I was already over dressed.
No traffic getting downtown to the start. The VIP passes we got hooked up with helped get us closer to the start line. we parked at about 515am and just took it easy for a few minutes. The VIP area wasnt even open until 530. I texted Talia and told her I was there. She wanted us to meet at 545 to go live at 6am. I have to be on the start line at 640.
We got out to walk and it was windy. Really windy. I left my pants in the car and thought i would hand over my wind breaker to John before I ran. Travel light. Sounded good. We made our way over to the VIP and used the private porta potties that already had waiting lines. Small ones. I was starting to get anxious.
We had to walk over a block or two to meet up with Talia. i was getting a little annoyed and frustrated at trying to find Talia and possibly not having enough time to stretch and focus or enjoy the VIP perks of breakfast and liquids. I had only eaten a banana and a Cliff Bar for breakfast.
We finally met up with Talia and her camera man. She promised to have me out by 610am. Great. Thatll give me just enough time. We did the live interview and then Talia wanted to interview me again for a separate segment. I felt like she was trying to put words in my mouth. THe cliche'd "Anythings possible" type thing. I dont know if "Anything" IS possible. Im not sure if it even is possible, that its a good idea. I get that people want to hear the inspirational sterotypes and I'm all for that, but I dont want to lie or say something that feels forced. So I danced around a few of her questions. It went fine though. Then she wanted to shoot some footage of me stretching there. That was not my plan and now its getting later than she said. I hate stretching on concrete, its uncomfortable and its not how I usually stretch but I didnt have my yoga mat and the grass was still wet from the night before. By the time we were done we only had enough time to make our way to the start line. I guy at the VIP tent helped us find our way over and Jen, John and I walked right to the front.
The most intense runners were there. all the fastest people were stretching right next to me. I had more stretching to do and some time to do it. The guy that helped me, Brian Lyons, came up to me. Im glad he did because I was very grateful for his help. I would only find out how helpful he was in about 5 1/2 hours.
It was getting to be go time. I put the blindfold on for the 5th time this year (half marathon included). And got prepared to run. I did a little dancing to "Bust a Move" by Young MC (I think) while i waited and thought about what others looking at me might be thinking?
The wheelchairs lined up and before ya knew it it was 655am! GO!! The wheelchairs were off and so were we. At least one or two steps before my extra water bottle fell out of my belt. Jen grabbed it and we were off again! What a farcical start! jeez...
The first couple of miles were surreal. No one was around except the people on the side lines cheering. And even that wasnt constant. But thats ok. Lots of long periods of quiet. But I started feeling like my muscles werent having fun. Usually the first couple miles of any marathon are the easiest for me. But not this time. Was I in for a rude awakening? I got lucky with the rain thing again but did I do something wrong in my training? WHat could I have done different? Doesnt matter now. A mile or two in the probable winner was passing me on my right. Little by little more and more people were catching up to me and passing me. Almost like a wave. And with that came the most amount of positive comments made to me in ANY of the marathons Ive ever run. Maybe because they were reading my sign on my back and maybe because of the announcement by the MC as I crossed the start line. Some mentioned seeing me that morning with Talia on TV. At a certain point saying "Thank You" was difficult. Extra oxygen Im not getting. It would come out more like "ank-oo".
A few miles in I told Jen to start looking for a bush for me to pee in. I wanted to skip porta potties if I could for this run. They eat up a ton of time. Jen had an idea of bringing me off the path of the race (more than I wouldve liked) to pee behind a dumpster, but them she wanted to pee there too. Ah! No I see why she brought me so far. Fine by me. We were off again.
The hills were rolling, up and down. The ups were steady but not unsettling and the downs were mostly subtle and relieving. John popped up where he said he would. First mile 6. Then mile 10. My muscles somewhere along the course loosened up and I wasnt thing about pain or discomfort yet. But there was a problem in my intestines. Uh oh. This was a first. I told Jen to keep a look ut for a porta potty. I wanted to avoid them and she said she saw some with no lines on the other side of the course. Where people were going to u-turn at some point and come back that way. I told her i might wait and she urged me not to. She reminded me that we had 16 miles still to go. Okay lets do it. She lead me over to the porta john. I peeked throygh my blindfold to see what I was doing. It wasnt that bad yet. I did what I needed to do. there was still plenty of toilet paper. I had great wipes in my belt and i felt a ton better.
Befre we got back on the road I wanted to fix anther problem I found in my sneaker. There something rubbing on my three small toes on my right foot. I thought it was a seam in the sneaker. I adjusted and thought that would be it.
A few miles late I had to stop again and take my sneaker off. It wasnt fixed. Jen suggested putting vaseline on my toes to avoid chaffing. I did it and I found that the problem wasnt the sneaker but my sock. THe seam inside was rubbing and was going to give me blisters so i turned it inside out and the problem was solved.
I kept expecting these enormous outrageous, impossible hills. I hit some in Austin and that took a toll on me. But these hills didnt feel like Austin. I dont know why. I couldnt see them so I cant tell if they were better or worse or the same. Maybe I was getting stronger? Is that possible? Why not? I would sure love these to get easier. After the LA marathon I was in a bad place because I thought they were getting harder. But the Hollywood Half I ran the week before gave me confidence.
Well that was it. That was the end of the stops we made beside filling water bottles and walking breaks. That extra one that fell in the beginning i emptied in my belly and threw it out. THere was no room for it on my belt.
The miles were clicking off, one by one. And before we knew it we were in the 20's. We passed the 15-19 miles that we were warned about moments before the race. They werent that bad. In fact I ran up most of the hills. But by the time I reached the 20's my body was feeling it. there were still more hills to deal with and sometimes i did some walking instead of running. But when we were going downhill or on flat ground we took advantage of it. The gusts of wind were a problem only a couple of times. Once my hat got blown off my head.
Jen had the idea of dedicating the last few miles to my brother, my nephew liam and my deceased grandfather. All guys with Choroideremia. And then the last .2 for my baby nephew who hasnt been tested yet. That really helped me get through those miles. I thought a lot about them and even git choked up a couple of times. First for Poppy, the Kevin, then Little Liam and baby Aidan (who is 3). That last .2 i found some extra energy and sped up to the finish line!!! YES!!!
Another one in the bank! And who was at the finish? Talia! Wanting to do an interview with me. Ok. She was by herself this time and had multiple tech issues. I was beat and needed to eat and drink something asap, but she was holding me up. Its ok though. I had a nice piece on me on the news that night that I watched.
I got my medal. Thanked my cousin. Got some pics and we were guided back to the VIP tent. Where a nice woman named Nancy got me two beers. I met up with the Biggest Loser relay team in the tent. Jen had ran by at some point and said hi to me. It was nice to be done. And I found out my time was 5 hours 14 minutes and 32 seconds. MY BEST TIME EVER!!! I couldnt believe it. It seemed impossible. But it was true. My best time before that was Arizona in January which was 5 hours and 34 minutes. Im convinced that letting me run ahead of everybody is the secret. There was alomost no stopping due to congestion which is the biggest problem for me. Its less dangerous. Theres less people to bump into, trip over, Im not tripping over clothes that have been discarded. the cups I run through at water stops arent as bad. Its much better.
We made our way back to the hotel. John was off to get back to Chicago and then LA and Jen took a shower and took the shuttle to the airport. She flew back to Syracuse that night. I spent a lot of time figuring out what to eat. I was famished. I settled on Steaks and Shakes. It was across the street from the hotel. I ordered everything to go. A salad, a burger and a soda. Later that night Id go to the hotel bar and get a few beers and hot wings to bring back to my room while i watched Celebrity Apprentice. And then I slept.
I woke up at 10am and shortly afterwards was walked in on by a guy in housekeeping. He didnt knock and he ignored my "Do Not Disturb" sign. I had til noon to check out. Im not sure what he was thinking. I was able to get a late check out. I ate at Steak and Shakes again for lunch and took the 420pm flight back to LA where my angel of a girlfriend picked me up. (I mentioned this earlier)
Surprisingly I was the least sore for this marathon more than any other i think. Not to say I wasnt sore but I had less difficulty getting around.
Sadly, though Im far behind on my $12,000 per marathon goal. Im hoping I can make up some of this, but I need a lot of help. Theres a paypal at the top of this page where people can donate any amount. its all a big help. Please help. Please tell your family and friends what Im up to. Thank you so much!!
EJ
@ejscott
@12marathons2012
@deborah_annwoll
www.facebook.com/ejscottpage
www.facebook.com/12marathons2012
www.crowdrise.com/ejcurechm
www.curechm.org
