Tuesday, May 27, 2008

One Year and the Battle Rages on Versus ALS (Lou Gehrig's Disease)

In 2005 I flew to Kona thinking I'd be a coach to two of the athletes I helped train for the Ironman World Championship and a race volunteer (an athletic supporter) if you will.

I flew in on Wednesday and swam in the beautiful Pacific Ocean, ran on Alii Drive next to world champions and celebrated the five year anniversary of my finish in Kona with a very un-Ironmanlike fillet at sunset at Huggo's. I talked to Mark Allen a fair bit. Ironman originals like Dr. Frank Day and a few others like my athletes and my friend and oldest IMH finisher Bob McKeague (81 at the time, 84 this year and still racing). Bob trains with us at Village CycleSport bike intervals on Thursday nights so I felt pretty close to him and his wife Maryann. I had heard some "warrior

3:45 AM - I walk onto the pier for the first volunteer duty the pre-race transition set up. I helped some lesser known pros prepare their bikes. Some old school U.S. Army officers set up their really heavy steel bikes; I remember thinking that these guys have the heaviest bikes on the pier and they are among the oldest out here. Amazing! Volunteering at the race was very rewarding and educational.

7:55 AM - I am guiding people out of transition (look for the handsome guy on the video with the blue NOTRE DAME hat and blue Oakleys as Natasha runs by to start her bike ride).

Noon - I catch Cam Widoff's bike (5th place bike at that point - 1st American). Cam grew up about 7 miles from where I live now. I often find myself racing against his brother Ben, so I thought it was cool to catch his bike.

Then a chance encounter that has changed many lives.

I met the 2/3rds of the Blais family.

That particular Saturday was the same day as USC vs. Notre Dame. Being accepted into the Notre Dame Executive MBA program I felt I should wear my ND hat which has become part of me really. As you might guess, there were more than a few USC fans at, in and volunteering at this particular race. I had worked hard for about 12+ hours when the coordinator of T2 said to me, "Bob, I'd like to sincerely thank you for all your great help today. Your race experience and knowledge has really helped a lot of racers. I hope some said thank you. I'd like to invite you to work the last hour of the finish line and to dinner on Sunday night if you can make it." We were standing right next to the fence next to a few spectators, namely Bob and Mary Ann Blais. Earlier we had struck up a conversation about Notre Dame and Bob (being a Notre Dame fan) was giving me updates on the USC/Notre Dame game as I worked. All he said to me when I asked who he was here to see, "My son is doing the race." Then the director of T2 said, "One more thing. You have to take off that bull shit Notre Dame hat. I went to USC." Bob Blais spoke up, "Hey! He is a good guy busting his ass out here. Notre Dame is a great school. Easy buddy." He just smiled. I laughed. Good natured ribbing. I didn't do my undergraduate experience at Notre Dame so I'm sort of, not really a full Irish fan. I hope they win and all but it doesn't make me any more money if they win or lose. Even Missouri winning a lot of football this year...great, but what does it do for me now? Someone who doesn't identify his self worth with a team I am not a part of?

Fast forward to the finish...before I'm working and see my two athletes finish. Smiles ear to ear - PRs and girlfriends/families hugging in the post finish line area. (My athletes didn't run with their families to the finish line. They all felt that they wouldn't clog the finish area with their family. This has become one of the rules in my coaching. I won't coach someone who brings their family through the shute of a race as I feel it is unsportsmanlike behavior and should be a DQ.)

I am talking to Sarah Reinertsen's brother and father. Very nice folks. I've never spoken to her but if she is half as nice as her brother...she must be pretty cool. Sarah finishes and the finish erupts into one of the loudest stadium scenes I've ever heard. My mobile phone registers a db level of 145. Seeing her finish 20 feet in front of me was pretty amazing.

Next, at 81, Bob McKeague finishes. He finished with his grand children...ok, we let that one slide - no DQ. At 81 I hope I am vertical and chewing solid food. After the TV cameras go away, I give Bob and Mary Ann a big hug. Suddenly there is a flood of light and we have cameras on us - crap. I tell Bob, "I'll see you tomorrow when the cameras aren't around. Nice work Bobby!"

Next would be Jon Blais. Then I see Bob and Mary Ann Blais. Whoa! "That is Bob and Mary Ann from earlier today" I thought. Their son is the guy with ALS? He is my age! Shit! I was expecting a guy a little older to be brutally honest.

After midnight. I've been up for 21 hours working the race that I wasn't in for no pay except motivation. I'm helping clean up the finish area and saying final mahalos and alohas to some of my Hawaiian friends. One of the security guards at the finish area is a really big Hawaiian guy who played football at U of H. Great guy. Looking forward to having a beer with him in 2008. Glad he is my friend because I wouldn't want him mad at me...ever. I walk over to the medical tent to tell Dr. Bob Laird that the final ambulances are leaving for the hospital and to see if he has anyone else needing an evac or assistance. He is sitting with Bob, MaryAnn and Jon Blais. Dr. Laird leaves and I start talking with them. I learned a lot about what he went through. Three hours later I leave. I've been up 24 straight hours now. I drag myself back to the King Kam Hotel and crash for an hour. Then the wake up call comes and I'm off to the airport.

Funny thing...I've had one hour sleep in the last 36 hrs and I can't sleep on the plane. I was thinking about Jon and ALS. We have to help. Something has to be done. The following week on a training run the spin a thon idea was hatched and we would make it global by emailing our Ironman friends around the world. Spinning or outdoor rides would occur on six continents and in 14 countries. Even if they were only riding for an hour...they would think of ALS and "that guy" who did the Hawaiian Ironman with the disease. Three years later and some $80,000 later we have helped. The spin a thon. We work ALS tag days.

We have kept the spirit of fighting ALS literally to the death...alive. No TV cameras. OK, a little bit of press but no big awards or accolades. My award will come one day when as Aimee (http://www.askaboutaimee.com/) said, "One day a doctor will say to someone; 'You have ALS. Just take this pill and you'll be ok' and no more will ALS tear apart people, lives and families." That will be my reward. That I had a part in stopping a disease that nobody likes to talk about and that patients (notice I am not saying 'victim' - being a victim is a choice, patient is not a choice) will no longer die from this. A disease that Major League Baseball ignores although it took one of its Hall of Fame players from one of the most storied franchisees the NY Yankees. A disease that affects more people every day. A bulldozer with no neutral gear or brake. A disease that wears care takers out beyond any fatigue that an Ironman can bring. Like water torture, every day, drip, drip, drip - every day until the angel of death appears. People don't survive ALS like Cancer...ALS has a 0% survival chance. If Lance Armstrong got ALS instead of Cancer, he'd be dead right now and would have never won a thing. **Reader's note: I'm not diminishing Cancer, just pointing out a fact. I've lost 12 members of my extended family to Cancer including two grandparents (both of their "treatable" Cancers were misdiagnosed as other health conditions)...chew on that a minute.

As Bono (U2) said, "Am I bugging you? Didn't mean to bug you."

As an athlete (scratch that) as a human being, 1) I am grateful for my fortune of strength and good health 2) I am grateful for the opportunity to help ALS patients and their families by bringing awareness and minor fundraising to a community of people and lastly 3) I am grateful that my friends and colleagues have joined me in this effort (and the biggest secret...we've had fun and made TONS of business, athletic and personal friendships!)

The last time I spoke to Jon, he was near death. We were never really "friends" but we had an unspoken understanding which we agreed to whole heatedly. The courage of going into THE Ironman and finishing when you can't train, can't use your muscles...and you do it.

This battle with ALS...it isn't over. We've just begun. Don't wait for the TV cameras or the lottery slot for your 15 minutes of fame. They probably won't come. Another "donation story" as a Chicago Tribune editor called it - "Who cares? It's not different versus any other story." Oh yes it is buddy. You'll realize that when someone you know gets ALS.

Freedom brother. Freedom.

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