THE CHOROIDEREMIA RESEARCH FOUNDATION

Thursday, October 14, 2010

The Chicago Marathon BLINDFOLDED!!! 10/10/10

It's Thursday now. 4 days after the marathon I trained 9 months for. I thought I'd write sooner but I'm finally healing. :)

Last monday I was in the bathroom and thought I should start getting my apartment ready for visitors. As I was cleaning the bathroom sink something pulled in my back. Spasm might be a better word. Luckily I had already made an appointment with my chiropractor for that same morning. My history of back pain goes way back, but training for this marathon has aggravated it quite a bit. I went every day last week Mon-Fri for adjustments. Never feeling 100%, but feeling better. I was concerned about my back for the race. Thats the last thing I need, is a bad back for 26.2 miles.

My training was now getting affected. I had to skip a few training days due to fear. Fear I would damage myself too much to participate.

I was lucky enough to get CBS news interested in what I was doing. And Megan Mawicke came to my gym to interview me.

I was interviewed over the phone by Kyra Kyles for the RedEye and that finally came out the Friday before the race.

Steve Johnson took me to dinner at the Hopleaf and recorded our 2 hour interview. The pay off was a tasty dinner and the cover of the Chicago Tribune.

Jenna Marotta interviewed me and I got a little write up on an online Chicago Mag blog.

My girlfriend came into town on Thursday and my cousin Jenny and Aunt Karen came on Friday (they stayed with friends close by). My mom, Aunt Diane, Aunt Beth (no relation), brother Kevin and his girlfriend Megan came on Saturday. I met with Janelle (cousin in-law) at the airport on Saturday and we headed off to McCormack Place to get our packets for the race. 15115 was my bib number.

All week I was changing my sleeping patterns so I would be ready to wake up at 5am on Sunday. I was as ready as i'd ever be. I woke u on my own at about 3:45am and stayed up. With only 6, or so, hours of sleep I got up and started getting ready. My back felt ok, but I was skeptical. None of it matters at this point. Its happening one way or another.

Janelle stayed with Deb and I. After some fruit for me, a bagel for Janelle, and I'm not sure what Deb ate, we were off. A 15ish minute walk to the redline. Where, with every stop, the cars got more and more crowded with people wearing bib numbers and eating bananas. We got out at Jackson along with the majority, and looked for a place to meet up with everyone else that seemed to be scattered amongst the city.

I stretched out on the grass with thousands of others, also stretching or waiting on line for a porta potty or already set at their assigned corrals. The sun was peaking its head above above the trees which meant it was about time for my blindfold. It's probably somewhere in the neighborhood of 7am now.

I get a round of hugs and good lucks from my support team and Janelle and Jenny and I head for the start. On the way into the open corral CBS news stops me and asks some questions. I talk quickly about my brother, nephew and I losing our sight to Choroideremia. And reason why I have to run with the blindfold and have Janelle and Jenny run with me. I dont know if any of it ever made it anywhere.

I had a laminated sign pinned to my back with my disease on it and a warning to other runners that I am indeed blind. I was going to hold onto Janelles forearm while Jenny would politely ask runners ahead of us to move over because I'm blind and coming up behind them. It all seemed to work out pretty well.

The roads were awful. All the different textures made it especially difficult. Around mile 3 I needed a pee break and it just so happened we were passing a gas station. Perfect! No line for the bathroom and it was alot cleaner than a porta john. That would be my first and last bathroom break for the next 5 + hours.

It was certainly nice to hear people on the side lines or even fellow runners telling e they read about me in the paper or saw me on the news and best of luck and all sorts of kind things. Sometimes I even had people I knew yelling encouraging things from the sides. My girlfriend and family even caught up with me a couple times.

I beat my previous half mile time (even with a bathroom break) by about 1 minute. Not bad. But that was only 13.1 miles into it. We still had another 3 hours to go.

After the 20 mile mark I felt ok I guess. My back was holding up quite nicely and so were my nipple guards, also a concern. Chaffed nipples can be awfully painful and make a long day much longer. It was getting hotter. It probably around noon by now and I still had another 6.2 miles to go. I have never run more than 20 miles in my training and I had always heard the 20 mile mark was the toughest part mentally and physically.

It was around mile 22, i think, where I started wanting to cry. Not because I was in so much pain, because I wasn't really. It was 5 hours of being blindfolded and thinking about what that means and what I'm doing and why. My body was getting tired and fighting tears was hard. I was blindfolded so I don't think anyone noticed but I almost shut down completely verbally. Only talking in whispers... "water", "keep going", "thank you". I fought off tears and just total breakdown for the next 2 or 3 miles.

A couple times my cousin asked if I wanted to stop at the water stations and I didn't even talk I just threw my hand forward to keep going. I was holding my cane folded up the whole time. I did that for the other half marathons I ran too. It works for whatever reason, I like holding it as I run.

I was taking walking breaks pretty much every mile, but that last one. That last one I wanted to run the whole thing. I had heard the last mile goes uphill a bit and what I heard was true. We were going uphill for what seemed like most of it. After I hit 26 miles I tried to increase my speed. Not to show off, but to end it. It was now over 5 1/2 hours of running blindfolded and I had had enough.

My time was 5:37:23. I was hoping to be done by 5:30, but no big deal. It was a hot day and I did my best.

I took my blindfold off but couldn't open my eyes because of how bright it was, even with the sunglasses. I had to keep them closed for a long while. I almost cried when my crying girlfriend hugged me and then my crying mother. It was pretty wild. I was spent and ready to go home. I said my thanks and good byes with my eyes closed and Deb and I took me home. Took a while, but it was nice be back. My legs were sore and behind my left knee felt real bad and tight. Walking up and down stairs was anything but easy. Its finally feeling more second nature now.

I said I'd never run another, but you never know.

Thanks to everyone that supported me and continues to. I greatly appreciate it.

please donate to my $100,000 goal. I'm at around $45,000 of that goal. Thanks so much!!

Much love,

EJ Scott

05K08:28:25AM00:34:5034:5011:135.35
10K09:08:18AM01:14:4339:5312:514.67
15K09:42:08AM01:48:3333:5010:545.51
20K10:20:24AM02:26:4938:1612:204.87
HALF10:27:46AM02:34:1107:2210:485.56
25K11:01:35AM03:08:0033:4913:574.30
30K11:43:28AM03:49:5341:5313:294.45
35K12:28:25AM04:34:5044:5714:284.15
40K01:13:31PM05:19:5645:0614:314.13
Finish01:30:58PM05:37:2317:2712:484.69
place (M/W)17291
place (ag)2939
place (total)29530
time total (netto)05:37:23


Monday, August 2, 2010

I ran 13.1 miles on Aug 1st BLINDFOLDED for a cure!!

I had tried to change my sleeping pattern so that when the day came I would be at least a little rested. I was only able to do it for a couple days prior, usually just going to bed very late and waking up early. So the night be fore I got real lucky and fell asleep at 8:30 pm. Sweet!! Then I woke up at 2am and couldn’t get back to sleep. Not sweet!! So I had 5 ½ hours of sleep to run 13.1 miles blindfolded.

My breakfast was light: 2 bananas, a handful of starwberries and a handful of blueberries. Ryan, my cousin of 23 (almost 24) years came in the day before to guide me through it. He has been running many years and often runs up to 13 miles just for shits and giggles. I’m just doing it for shits.

I wasn’t as nervous as I was expecting. I was feeling ok actually. Ryan and I walked to the red line train at about 5am-ish. I wasn’t sure how trains were gonna run on a Sunday, but it came reasonably quick. And as we got to each stop the train was filling up more and more with people wearing ballcaps, running sneakers with orange bands on them, skimpy shorts and ipods attached to their upper arms. It was a bit on the chilly side but still fairly humid. Ryan and I decided to wear clothes over our running gear and find a place to hide it at the start line and hope it would still be there after, but the clothes we wore we didn’t care too heavily about so if it disappeared no big loss.

We got off at Jackson, as most of the rest of the passengers did as well. We followed the herd to Grant park where you could hear music blaring from giant speakers and you could wait on long lines for the army of Porta Potties occupying much of the space of the grass. People were everywhere. Hundreds…. Thousands!! After a trip to the good ole PP Ryan and I got ready. I doused myself with sun tan lotion, used an anti chaffing roll on my hard to reach places and topped it off with some nipple guards to avoid that pain. Ryan packed a plastic bag up with the lotion and extra clothes and hid it in a tree. Hope its there later.

I didn’t know what “corral” meant when I read it on my registration email I was sent. I was corral 24. Ryan was 21. They place you in different starting areas—“corrals”—depending on how experienced or fast a runner you are. We walked up to path where the runners were been caged, it seemed cage like anyway. We found a good spot for us to start stretching. They had already started letting the first corrals through at 6:30 am. But we had some time til they got to us. I was still feeling pretty good. I took out my blindfold which is something my girlfriend cut off of an old curtain I think, I may be wrong. Its cloth, but reminds me of canvas but softer. Very long and thin. I wrapped it around my eyes three times and still had enough to double knot it. I made sure I could not see out of it and that no sun could get in. In doing so, the wrap covered a good portion of my face and even my ears.

I put my hands on Ryan’s shoulders and we shuffled into the crowd. There was a man and woman (John and Anne) hosting the event and announcing each corral as it crossed over the start line. They sounded like bad morning talk show hosts, “Good Morning, Chicago!!”. That type. They were trying to do rhymes with the corral numbers: “Corral number 8, you guys are great!!”, “Corral number 9, looking fine!!”. That type. I couldn’t wait to start running just to get away from them. It was slow moving. We were in Corral 22 even though neither of us was 22. Finally we were next!!...... Can’t rhyme 22 guys? Okay. Here we go!! 7:08 am we are off!!

My goal for the race was to not be eliminated and finish. I didn’t care if I was last. But secretly I wanted to break 3 hours. We were running pretty good. I go fairly slow. On the treadmill when I train I go about 5mph. My hope was to do a mile and walk for 60-90 seconds every mile. Unexpectedly we took a PP break at the first water stop. One mile in and I’m already behind. Then we took another PP break at 4 mile mark I think, maybe 5.

I learned early on that my original idea of holding Ryan’s elbow wasn’t going to work. I had to hold on to the top of his shoulder. And in my other hand was my folded up cane. Ryan had written “curechm.org” on both of my arms with marker, but the suntan lotion faded it.

The difficult parts of the race were when I wanted to run faster and couldn’t because other people were going slower in front of us. Zig Zagging in and out and around people is more difficult when you are two people wide and one can’t see. So I was getting more and more frustrated with stopping and starting and being dragged in all different directions. That stuff was really hard.

The things I was most worried about were my back and feet and cramping. In my training I ran 11 miles once and when I got off I could barely move because my back was so messed up. Since then I’ve been going to a chiropractor on a semi regular basis. My feet have been bothering me for years. But when I lost weight they were feeling better, until I started running long distances. Then they started hurting and throbbing again. I got new insoles on the advice of Cathy from Runner’s Edge. Thank you Cathy. They helped a lot.

As we ran people were coming up to us and telling us how great we were doing, they used words like “amazing”, “inspiring”, etc. Was I the only one out of 20,000 people running blindfolded? I guess so. Those words were great and very helpful.

I must say that by the 10th mile I was anxious to get to the finish. I’ve had a lot of water and GU packs (energy shots). And although I was feeling fairly good physically I think mentally I was working to keep it together. Being blindfolded and not in control of anything was kinda hard.

Oh I forgot about my neck! I was noticing while running that my head would fall back and I had to be conscious of keeping my head straight. It was feeling tight and that made me worry about that.

Anyway, I had abandoned the 3 hour finish half way through the race. But when we were coming up on the finish line, I extended my cane, and tripped over the finish line. But I made it!! And I made it in 2:59:55. I beat the time I wanted by 5 seconds!! Sweet!!! We got some water, a popsicle and our bag was still in the tree. All in all a very triumphant day. Now I’m thinking of doing the Chicago Half Marathon on Sept 12th. I just need a running partner.

Thanks to all those who have been sending kind words and donating money to the cause. You can still sponsor me at

www.ejcurechm.blogspot.com


and if theres a problem with that please go to.


www.curechm.org

Thank you so much.

Much love

EJ

Wednesday, July 28, 2010

HELLO NEW READERS!!

Maybe you read Nikki Reeds blog or maybe you found this some other way. In any case thank you for taking the time and an extra thanks if you have donated to the cause!! The above Paypal button is directly linked to the Choroideremia Research Foundation. I am trying to raise at least $100,000 for sponsorship on my races. Please donate what you can and please let your family and friends know about what I'm doing and about Choroideremia. Are YOU running any marathons or involved in a situation where you would be able to raise money for charity? Well please consider the Choroideremia Research Foundation. We thank you so much for your support and good thoughts.

All the best.

EJ

www.curechm.org

Thursday, June 10, 2010

Here is a link to the blog that explains in more depth where the money would go and who would benefit from the research. Thank you.

http://curechm.blogspot.com/2010/06/stephanie-andrew-choroideremia-chm-word.html

Raising money for what exactly?

"Well, we're raising money right now to fund the preclinical work to get us to Phase I trials, and then raising to fund the trials themselves. Estimated total cost is about 2.5 million dollars, so I think it's safe for you to say you're raising the money to get us to Phase I trials that can potentially save what sight you have left." -- Cory MacDonald, founder of the Choroideremia Research Foundation.