Research for Cure

Today Master Lee and I met at the Civic Center to pick up our bibs and race packets. I got there ahead of him and took up a waiting spot at the top of the stairs in the shade. Great vantage point to people watch and I'm already up the ramp once he arrives. I LOVE text messaging! What did we do without cell phones? Master Lee's arrival text actually saved a man's life.

While I was sitting in my quiet little shady spot, out of the way, some guy walks over and reaches out to hand me his pocket change. At first I was puzzled. There were other people "loitering" nearby. I was dressed like everyone else. I showered this morning....

The only difference between me and those around me was the wheel chair. He saw me and pitied the poor little cripple girl and assumed I was panhandling. Just as all the synapses connected and I was about to gently educate this fine fellow, my text message alert went off and distracted me. Master Lee had arrived and was waiting further down the way. I left without comment and the kind stranger got to keep his hand.

While in the expo, we wandered through all the exhibits. Cool new shoes, disposable running gear to get you through the cold morning, nutrition and more.

One booth caught my attention and I rolled in with the others there. Like those around me, I reached into the fish bowl to take a free sample of the energy gel. A woman working the booth actually grabbed my wrist. "Oh sweetie" she cooed as if speaking to a 4 year old "those are only for the athletes."

Funny, no one else was stopped. I lifted the bag on my lap to reveal my bib and her eyes widened. I just rolled my eyes, shook my head and muttered "Unbelievable! People in wheelchairs are athletes too." I left without her stinking sample.

Today is a day of victory and accomplishment. I need to keep that in the forefront of my mind. I can only guess that there will be a few people along the course who will be shocked to see that sometimes "able" people use wheelchairs.

Caught up with friends and we took a look back at how far Iâ??ve come. Itâ??s hard to believe there was a time that it took weeks just to learn to sit again. The times in & out of the hospital near death from infections; all of the frustrating, embarrassing or dangerous problems as Iâ??ve learned to adapt; all of the people who have given of themselves to help me build a life.



As soon as I post this, Iâ??ll come up with a list of even more people that I should thank here.

â?¡ EVERY SINGLE CONTRIBUTION. In this economy, some folks have handed me every dime they can spare with an apology that it wasnâ??t enough. Every dollar moves us forward. Every person you tell about your friend in a wheelchair humanizes our struggle. YOU HAVE DONE THIS. I just get to wheel across the finish line of this particular race in your honor.

â?¡ Jill: Youâ??ve been there since Day 1 of Rehab. Jill didnâ??t laugh or try to talk me out of this idea. She found a racing chair Jill gives time that she could be spending with her family to support women with SCI.

â?¡ The Oâ??Donnell Family who have given me shelter, support, friendship and more.

â?¡ Michelle and Tony who gave me a home when I most needed it. Your protection and shelter allowed me to live and rebuild.

â?¡ Lisa and Sandyâ?¦ Youâ??ve supported me every step of the way. With friends like you, there is NOTHING that I canâ??t do.

â?¡ Zanne: My beautiful sister/friend. Every day, youâ??ve been there. When Zanne believes I can do something, then thereâ??s no doubt that I can.

â?¡ Karen, Don, Betheny and Franâ?¦ You have taught me how to advocate, gave me hope & passion.

â?¡ The folks at GCC Adapted Gymâ?¦ Never once scoffed when this weak emaciated body rolled in saying â??Iâ??m going to do the marathon.â?? They helped me bring health &strength into this broken body. Canâ??t wait to get back and see what we can create together next.

â?¡ Gary Hershey at PRN who always answers his phone with â??whadya need kid?â?? and then solves the problem.

â?¡ Shireen and Hickmanâ??s Farms for so much support and tons of free eggs. I LOVE the new T-shirts. Iâ??ll be wearing that a lot!

â?¡ Bob Câ?¦. You found the secret to ending my infections. You talked to me EVERY day when I was too weak to will myself to stay alive. Thank you is not enough.

â?¡ The Care Cure Community who tirelessly advocate, educate, support and fund awareness and research and care.

â?¡ EVERY ONE at RIRC who had devoted their lives and careers to ending the pain of SCI and other neuro-degenerative disorders. We would be no where without you. Hans, I think of you every time I hear a helicopter.

â?¡ All of the folks on the Hill who have worked to pass the Christopher and Dana Reeve Paralysis Act, especially Senators Harkin, Kennedy, Clinton, Durbin, and Reid.

â?¡ Senior Master Mark Kaup-Lee, my training partner and coach. A man kind enough and crazy enough to do this thing with me. He reminds me that weâ??ll cross the finish line together, no matter what. I believe him.

â?¡ MCL, every breath I take, every thing I do, I do for you. I hope one day to make you proud. I love you so very much and although you donâ??t understand it yet, this is very much for you. I hope that youâ??ll learn how to fight for what you believe in and to always support that which you believe is right. You can do anything you put your mind to and I hope that when things get tough and you think you might want to give up, youâ??ll remember what this broken, twisted 50 year old woman did with nothing more than grit and friends. You too can do anything.



There are sooooo many other people who should be singled out but Iâ??ll never leave the computer if I start that list. I wouldnâ??t be here without you. Youâ??ve kept me alive, taught me how to adjust and better yet, THRIVE. You laugh with me, cry with me, dream with me and when needed, kick me hard (where I canâ??t feel it).

Master Lee and I did a nice push this morning and it felt really good. I'm looking forward to Sunday.... OMG SUNDAY... eek! It seems strange to call a 4 mile push "lazy" and it feels strange to be sitting at home wolfing down pasta. Hey, if someone had told me before that there was beer at the finish line, I'd be marathoning every weekend! LOL.

The really, really lazy part is that I'm cutting and pasting a thank you email that I sent to my address book. Honestly, I appreciate your support so very much. I could not have gotten this far without each of you. Every dollar, every comment has driven me to push harder to raise money AND raise awareness that SCI and neurodegenerative disorders create their own special hell that one day we can change.

There's so much I want to say and right now, as I type, I'm tearing up a little. Thank you. This is huge. Here's that email....

Bad news first... I was leaving a store today and whacked my knuckle hard enough that I'm fairly sure it's broken. :( Why is ADA compliance so difficult? The doorway was waaaay to narrow. But, that's a rant for a different day.

The GOOD news; I'm still in this race and still steadily raising pledges. THANK YOU ALL

The "GOODER" news; there are some very kind and generous people here in the Valley. Through a friend of a friend, the people at Hickman's learned about my effort here. They have seen that I have plenty of eggs to nutritionally support my training. AND they just made a VERY generous donation. THANK YOU HICKMAN'S.

As I've said before, the Chip-In total does not reflect the checks I've received. We're at $3,500 right now.

Now, Master Lee has gotten really competitive in the fundraising (he already smokes me in miles) but I'm hoping to hold this lead and retain at least some bragging rights for the next year.

Thank you again for your support and encouragement. I can't do this without you.

Today, I drove the marathon route. I think I can do it. There's a NASTY stretch at mile 10 that is very hilly but I've trained long and hard and I'm about as trained as I can get at this point.

Now, it's all about healing and recharging my body so that the best possible "me" shows up at the starting line on the 18th. Now it's easy 4-6 mile pushes, good food and stretching.

My hands are my biggest worry. I hope the blisters heal up in time and that I truly have figured out the secret to taping them up properly so I can run on them.

I have gotten so many notes of encouragement. Thank you all. I'll keep your support in the forefront of my mind on race day. Grit, determination, focus, that's all I have left to pour into the race. I am driven and I promise to finish strong.

Master Lee is the ... well... Master of the tough work out. He set up this 1.2 mile loop that is really hard if you do it in one direction and EVEN HARDER if you do it the other direction. So, of course, we would do a lap in one direction and then reverse and do the next lap the other direction. He's an animal!

11 laps and 3.5 hours later, we finished 13.2 miles! I hate him during a training run but love him after. So much so, we came home and I make ham and eggs for us both.

Learned several things this morning that will make race day easier; how and where to tape my hands, what to wear, how I'm gonna stow it as I take it off (there will be a 20 - 30 degree temperature swing during the race); how to carry my water and food so I can reach it without stopping... I am very content right now and confident that I'll finish the race in the time allowed. I know Master Lee can do it. Today wasn't much of a workout for him.

We'll see what tomorrow brings. My hands ache and my blisters yet again have their own blisters. I hope my shoulders work in the morning!

I woke up this morning unsure that I can truly finish this race. My 50 pound wheelchair is feeling heavier and heavier each time I go out to push. My shoulders are aching and my blisters have blisters. I can barely do the things I need to day-to-day because my hands and shoulders hurt so bad. Not a good thing in a wheelchair user.

This "secret" was posted at PostSecret today. It felt like a sign, a reminder that this marathon is bigger than me. I am humbled and remotivated.

Researchers at the Reeve-Irvine Research Center are ready to begin Human clinical trials in a treatment for infants with SMA1. I have followed the progress of these trials for selfish reasons;. This treatment, once proven successful, will be used to return function to people with chronic spinal cord injuries. People like me and so many others.

If the people of RIRC are willing to dedicate their lives to figuring out how to help babies with SMA1 and how to restore function in people with chronic spinal cord injury, surely I can give a few weeks of pain, sweat and a little blood to support them.

If you're moved by this, I hope you'll participate in whatever manner you can. Of course a financial donation is great but there is so much more that can be done.

Please, sign the petition for SMA while you're at it, sign the petition for spinal cord injury research. Both will only take a second of your time.


And, if you're able, please consider a donation to my marathon effort. All funds go to the Reeve-Irvine Research Center where one day, scientists will announce treatments for both of these horrible conditions

I've been training with Master Lee. He's doing the race with me. I do not know how he did it but he created a course that was uphill no matter which way I went at it. It was killer. He's not happy unless one of his students vomits in class. I thought I was going to give him a thrill LOL.

The good news is that I did it! All 7 miles today and I was slow but if I can survive training with him. I can do this race!

Thanks everyone for your generous support. Every contribution tells me that each of you believes. It means a lot and with your support, I'll get through this race. Together we'll raise some funds and kick SCI in the butt.