THE CHOROIDEREMIA RESEARCH FOUNDATION

Saturday, January 26, 2013

LAS VEGAS Marathon!!! DONE!! 12 down 0 to go!!!

This has nothing to do with anything but I've been listening to a yapping/barking dog for the last 4 hours on my flight from JFK TO LAX. I celebrated the holidays with family and now will celebrate new years with just Deborah and I. I asked the girl maybe around 30? Who is sitting is business class, if she could do anything about her barking dog. She looked at me like  "what do you expect me do about it?" I she said. Her dog was in the carrying case. I guess that means that if the dog was out it wouldn't be as disturbing? I find that hard to believe actually. I asked if the dog was trained. Trained? Yeah.  Trained To behave? Blank looks don't help anyone's case. Why was I bothering her? I'm sure she was offended by me even mentioning the dog. I felt bad for the dog actually. I felt bad for everyone in ear shot of that dog. I could hear the flight attendants complaining to each other. The people in first class and business paid a lot of money for those seats. Probably expecting to relax quite a bit on a 6 hour flight. I m in coach and I m close up to the entrance of business. The flight attendant in the beginning told me the girl said she gave the dog pills. That seems unlikely at this point. I'm sure that was most likely a lie. Poor tiny dog. 

I didn't want to start my final running blog with that. Sorry. Just venting. It's been about 4 weeks since my final run in Vegas. I haven't run since. I took some days off to just decompress and deb and I went on a nice vacation that we both earned, then flew to NY to hang out with our families for the holidays.

I flew out to Vegas the Friday before the run just in case I needed to do some publicly or a even a fundraiser. The fundraiser never worked out. I waited too long to try to get it together. But I liked the idea of getting in early just to get my bearings. Deborah was driving Inge herself the next day. I didn't want to sit in a small car for 5-6 hours before my final run. "my final run". I like the sound of that. 

It was going to be a big deal. My guide david and his wife were coming, my cousin Kathleen and her husband Jim were coming in from Austin. Kathleen helped me in the Austin marathon back in February. And she was running the half on Sunday. My mom and dad were flying in. And Patrick and John, my camera guys, we're driving in. Plus debs friend Kevin. And his fiancĂ©e. 

I got picked up from the airport by Brendan from fox news I think. I'll double check that. I spent a few hours sending emails to press that week and he was interested in doing a story on me. He and his camera guy picked me up and brought me straight to the expo. They interviewed me and I picked up my stuff. They even gave me a ride to my hotel. But first at the expo I met the ex mayor who had a martini and a show girl on each arm. He was introducing the expo and I was asked to join him. Nice guy. I mention Steve Wynn who is a billionaire in Vegas and the ex mayor talked about how mr Wynn has retinitis pigmentosa and has two seeing eye dogs. I was hoping to meet him while I was there but I called and other people called for me and they never got back to me. 

The palazzo was a stunning hotel. It's huge! It's like it's own city. I was lucky to get rooms donated to me and discounted rooms as well for my parents. Vegas can be very expensive. This was only my second trip to Vegas ever. The first time was with deb early in our relationship. 

I took it easy the first night. Ate light. Walked around. Trying to get my head together. I was feeling pretty good physically but I was getting wired on nerves. This race was going to be different in a few different ways. It starts very late. 3pm for the full marathon, 430 for the half. I was told there was a strict 4 1/2 hour cap for the run. The shortest cap I've experienced in any run for a full marathon. I've never run that fast. So I was nervous. I found out the half marathon has 4 hours and end in the same spot as the full. So that means I really had 5 1/2 hours to finish. Except that I had to reach the half way mark by 2 1/2 hours.or they will put me in a Sag wagon and bring me somewhere else. Or something like that. Didn't make too much sense to me. But ok I think I can make that. 

Since the sun was set to set at 430 I was excited and nervous about taking my blindfold off at that time. Which I estimated to be around mile 7 or 8. And then run the rest with no blindfold. But I've never done that. I only run without a blindfold on my treadmill at home. 

I wanted to get a short run in on Saturday. I was hoping to do it early. About 4 or 4 at the latest, but my camera guys were late. I was expecting them shortly after 3 but ididnt see them until after 6. That messing up my schedule and my head right off the bat. Now I was going to eat dinner a lot later than I wanted and get to bed much later too. Ok. 

I told my parents that I would meet them after my run for dinner. Deb was meeting with her friend Kevin and david was doing his own thing. I ate a salad and pizza for dinner. Was hoping for some pasta but the place we ended up in didn't serve it, it was getting so much later than I wanted that I just gave in. I would soon leave and go to bed while my camera guys stayed up met with a friend of theirs and go to a bar which I would learn the next day and of course they ended up being late the next day as well. Race day. 

I didn't sleep great and was up pretty early. I told the guys to meet at my hotel at 12 noon to get me getting ready. I Sent them a text at 1030 to confirm. No response. Sent another at 11. A few minutes later I got a response saying they just got up. The night before they told me they were going to church that Morning. I don't think they made it to church. I asked them to be on time. I was waiting for them. At 1130 or so they said it was going to be 1230. I had to get ready. I couldn't waiting for them. Especially since 1230 turned into 1245. Stuff like like before a marathon is the worst. My brain is clogged up with worry and anxiety and I need things to go well and I need people to do what they say they are going to do. Especially when it comes to Choroideremia related stuff. That's an extremely personal subject to me. And extra extra sensitive.

So many reliable helpful people that made this year so special. That really has a place in my heart forever. People that did what they said they were going to do. They didn't have to. I didn't pay the majority of these people. Nobody got anything from helping me. I was blown by all the help I got this year. Some people were total strangers!! Those people really made the year special and in the end really successful.  

Anyway John and pat drove me  the start line. There was no traffic thankfully and we were there early. Good. I like early. Gives me breathing room. I still kept my diet the same as every other race. Peanut butter and jelly sandwich, banana, and cliff bar. 

It was overcast and a nice temperature. I think things were going to be ok. I was drinking water like crazy so I wouldn't have that bladder issue again. (read Chicago blog). 

I wasn't suppose to start at the very front but I made my way there anyway. My hat blew off from the crazy wind on the way to the start line.,this wind would stay with me through out the day. 

I wrapped my head with my blindfold. They released the wheelchair guys first. And then released the first wave. And off I went. Nothing unusual in the beginning. David and I took a bathroom break and davids stomach wasn't working with him. Oh no. Just get me to mile 7 david please! He did no problem. I took my blindfold off at the designated area. Patrick was suppose to film it with Deborah around but deb said pat gave her the wrong spot to meet. that was a bummer for both of us. 

It was exciting taking that blindfold off though. It was pretty dark but I could still look around. The sun hadn't set all the way yet behind the clouds. I think I got too excited. I started running on my own and maybe the new adrenalin boost didn't give me clarity. At a certain point I told myself to take it easy. I still had a long way to go. Buy I was doing my 10 min run 1 min walk thing. I wasn't wearing glasses and I never saw any mile marker so I couldn't count on those. I didn't need David's help for most of it. He was close by most of the time. He went my pace. 

I had a blind runner sign on my back but if people didn't see it or read it they didn't know I had eye problems. So lots of people cut in front of me. I tripped over several people. I ran into a guy handing out water or Gatorade. One guy cut through the course (maybe an on looker) and I accidentally punched him in the face.  Heard "hey!" his head was at my running fist level. Total accident. That's not the first time that's happened in a race either. 

THere were some cool sights. See in the strip and we ran through a mall or something that had all these crazy lights and horribly loud music. It was about a mile long. David couldnt wait to get through it. He was hurting i didnt know how bad until a few miles to the end my hat blew off and he painfully went to pick it up for me. Poor guy. Never saw him like this for a marathon before. But he was keeping up and not complaining. 

I was close now. I could feel it I could see it. The last few miles were on the strip and it was pretty exciting. I realized at a certain point if I can make up some time I will have a new personal record for time. That meant not breaking for those last few miles. 

It started bottle necking at the end. Got crowded. But it didnt matter. If i was careful it was all good. THere was music and yelling and smoke machines and i think maybe fireworks? at the finish line. I did it! And I had a new personal best time. Im sure it had to do with no blindfold. I may even go back in 2013 for the half. Run the half by myself. We'll see. 

I found Deborah and enjoyed that moment with her. David was shaken up and needed to sit and rest. Poor guy. He was ok though. Hes tough. 

After an exhaustingly long walk back to the hotel we showered and went to get some food at a burger joint in the hotel. It was done. Over. It was and is still a great feeling. 

Deb and I stuck around Las Vegas another couple of days. We went to Gordon Ramsays Steak Restaurant. and even saw a Penn and Teller show. 

And now Im home. Finishing the blog in late january. Still thinking about what Im going to do this year. 

What Id like to do is get back into my creative roots. Get back to drawing and painting and writing, improv. 

I was worried I wouldnt make my goal of $144,000 by Jan 1st. Thanks to the King gamily in Chicago for having a hugely successful fundraiser that really put my fundraising goal over the top. My brother did a huge fundraiser in long island which raised $10,000. True Blood and everybody there has been so supportive and helpful. 

A great big thanks once again to all those that helped me this year. Everyone that retweeted or reposted something. A big thanks to John K, Josie A, Shad M, Lynn D, Nate B, Darryl M, Susan Z, Tracey B, CAA, Zoran G, Kevin Z, John M, Dave U, Don K, Whitney R, Nick D, Raelle T, David W, Janelle M, Jennifer C, Ryan C, Maureen F, Kathleen M, Anthony P, Alicia, Cory M, the KING family in Chicago, the WOLLS, the SCOTTS, Diane G, Joe G, Dr Pam T, Dr Iris W, Kelli M, all the WKT peeps!! the CRF. Everyone that interviewed me and wrote about me. Im sure there are people Im forgetting about. Its been the hardest year of my life. Physically, mentally, emotionally, but its also been really rewarding. I'll always be asking for donations for research until a treatment is found! So please keep donating. And I'll keep thinking of ways to raise money. thanks!!

www.curechm.org
www.ejscott.com
@ejscott

EJ 


1 comment:

  1. Got to say I completely giggled about punching the guy in the face :) My fiance is 37 and has choroideremia, I can't count the times he has accidentally hit someone or clothes lined a small child. The looks we get are humorous as we try to explain it wasn't on purpose! Our biggest complaint? Yellow wet floor signs! If he isn't with me, I take a few out on purpose so it feels like he is with me. ;) Keep up the work!!

    ReplyDelete