THE ODDS (Debbie Does ALS)


The next phase

I bought this new steering wheel cover tonight. Notice the ribbed sections--they are squishy and easier to grip.

I also bought some gloves--interestingly called Pit Crew gloves--that are very lightweight and have a sticky material on the palm side. I don't have a picture yet, but hope to remedy that tomorrow. Wearing these gloves gives me a bit more grip, too. I look like a crazy woman with them on--did I mention the sticky material is Ghostbusters green? I kid you not.

Hopefully this will make a difference.



Saturday was a pretty cool day.

First, I got up early and went to the battlefield for my "wog,” and was to meet the "team" afterward. I parked at the far end and set out. If you recall it was my objective to run all the downhills! So, I walked for some time -- getting my wind and my courage ready.

As I was walking, I encountered a woman who stopped to talk to me. She saw the shirt I was wearing (last year's "Race for Debbie" T-shirt) and she wanted to introduce herself. I knew who she was because I've met her four times over the last several years. She is the wife of a man I commuted with for many years. There are some people in this world you can see over and over again and they never remember you. This woman is one of those people. When we said goodbye, she said it was nice to meet me. I just chuckled.

So on I went. I came to the top of the downhill and began my gentle little run. Not fast, not strenuous, nice and easy and so blissfully more than a walk. I came to flat ground and the run became more challenging, so I walked. This happened over and over. I made it to the turnaround point (2.3 miles) and headed back.

Now. On the way back I saw some familiar faces off in the distance, faces of women from my running club. I wanted to hide. Why? Because I am self conscious and embarrassed by how I run. Stupid, I know, but it is what it is. There was nowhere TO hide, though, so I wogged on until the gap was closed. Dear Holly was one of the group and we exchanged a greeting and continued on our separate ways.

The pity party popped right in and took hold of me at that moment. Boo hoo, Louise cried, you can't run so well anymore; boo hoo you're a walrus; boo hoo your breathing is getting worse; boo hoo boo hoo. Oh yeah, I was full on into it. Started thinking about other PALS, those who are gone. Who can't run, or breathe or be a walrus. Once again, like so many many times before, I realized how stupid it is to whine; I'm much better off rejoicing in the slower steps, in the jiggly flesh, in the deep breaths I still manage to take. By the time I'd finished the 4.6 miles I was soaring.

After a fabulous post-wog quaff and subsequent bagel with Dear Lynne, I cleaned up and met Jenny for mani/pedis and a light bite at Kybecca. Oh my, the shrimp and grits were the best I've ever had. The vanilla pot de creme was an indulgence I'm glad I succumbed to. We also made a stop at World Market were we discovered the most wonderful bar of chocolate. I'd read about it but hadn't seen it anywhere. I bought one but should have bought 10!

The Curious Case of Benjamin Button finished the evening. I'd been wanting to see it and it was as good as I'd been told. In particular, I liked the idea of the old man/infant becoming the infant/old man.

I love days like this.


I'm thinking about getting a couple of these attached to my steering wheel, at the five o'clock and seven o'clock positions. My arms get pretty tired after a drive and I think this will allow me a more comfortable way to hold the steering wheel. I also think it will give me a little bit more leverage for steering. Before I can have these installed, however, I must meet with a driving evaluator who will recommend the best product.

Clearly this is not something I can make myself, using Allen wrenches and foam tubing.


June 25, 2000

Nine years ago today I ran for the very first time. I was at the Outer Banks and decided to give running a shot. I ran 2 miles--from our rental to the pier and back--and about keeled over. I had never been so winded or wiped out.

The next morning I could hardly descend the stairs, my leg muscles were so sore. But descend those stairs I did, and ran the 2 miles again.

I was at the beach for 13 days, and ran 10 of them What a life-changing event.

Baby baby steps

Last night, Cecilia and I went to Pratt Park again for a nice 3.3 mile walk. It was warmer than a few days ago but still not humid. The grass field was freshly mowed and I was grateful that I don't suffer from allergies!

Cecilia and I set off -- both with our iPods -- but not staying together. It was my intent to walk as energetically as possible. Paul Butterfield, Eminem, the White Stripes, Madeleine Peyroux, to name a few--all filled my head as I tromped along. My pace was cautious but brisk. I felt fairly strong.

I was about 200 yards away from the end of the third lap when I decided to try to run. My first few steps felt awkward and I almost stopped; determination kicked in, however, and I persevered and finished. My heart was pumping and my breathing was deep. Not like the runs from before, but I'll take it.

I plan to wog the battlefield on Saturday. From the parking area to the end of the road and back is approximately 4.5 miles. It's hilly--rolling hills, like so much of Virginia. I'll run as many downhills as I can.

It's amazing how such a little bit can go such a long way. I am actually encouraged.


A new discovery

I've only read the one story, but it was enough to enchant me. Adding it to the list.

Just in case

I know what I said before.

Not that I will use it, but I had Ellie complete the physician's portion of my handicap placard application. I'm going to have it on hand, just in case.

I hope this doesn't create bad karma.

More on the race

Since early in the week, thunderstorms threatened the status of the race. At a Tuesday evening powwow there was discussion about backup plans should the weather turn ugly. Saturday morning the weather looked promising -- clouds (some rather heavy looking) came and went. Around midday there was a short rain, followed by sunshine.

At 3 PM, Jennifer and I met Lynne and headed to Colonial Beach. We drove through a few pockets of rain, but nothing that lasted very long. When we arrived at the beach there were some clouds; it wasn't clear which way the weather would go.

Becky and John were already there. We set up some chairs and sat down to enjoy ourselves before the race began in earnest. The longer we stayed, the better the skies looked.

Becky and John played frisbee, Jennifer got in the water (she had never been to a river beach before), Lynne was called by and made calls to the other race organizers. I just sat there enjoying the sun and the people around me.

Close to 6 PM, John, Jenny, and Cecilia got to the beach. At this point the race setup began; volunteers were dispatched; the course was marked; the after race party area was roped off. People -- runners -- began to arrive. Friends appeared from all sides; I was so pleased to see so many.

At 7:30 PM the race started. The weather had improved so much that, if I was still running, I would have bagged this race. It was too hot for my taste.

Lead bikers.

The runners took off and headed up the boardwalk. Kenny, JR, and I walked over to the halfway point to see them do the turnaround. We got there with minutes to spare! Evan, one of the running club's fastest, came barreling through, followed closely (but not too closely) by two others. Becky's John was solidly fourth and close on his heels was Bob. I watched as Isaac, Adam, Ricardo, Holly, Lynne, Kendall, Janice, Nell, Tiffany and others made their way to the turnaround. So that I could be there when the first runners came in, I made my way to the finish line. Becky and Jenny were working the finish, removing chips and handing out ALS bracelets.

In spite of the heat, everyone finished strong. A special kudos to Jennifer McGee Martin who ran and finished her first 10K race. Here is a woman who doesn't know the meaning of the word fear. She sets a goal and claws her way to the finish; she is strength personified.

The after race party was great. Burgers were donated by Cheeseburger in Paradise, Adam's father Jeff donated the beer, there were hotdogs, chips and watermelon, sodas and water. Thank you, Kelly Clark, for providing the music. People stayed and ate, talked, drank, just had a great time. I got to hand out the awards and was pleased that so many of the recipients were my friends!

Lynne, Tam, and Vic, Janice, Nell, and Mark, Cathy, Tom, Heidi and Dave: Thank you. Those words don't even begin to convey the depth of my gratitude.

I hope we can repeat this race in 2010. I hope I am able to be part of it like I was this year.

Mel's son, Ryan, loving life...


The newest normal

Well. What a beautiful evening. When I got home there was a blue sky decorated with puffy clouds. A breeze that lifted my hair at the roots, gently but noticeably. Perfect warm temps without the typical June humidity. I had no choice--I had to be out in it. After dinner, C Claire and I drove over to Pratt and took a long, wonderful walk. Three point three miles. Just after two miles had been covered, down came some gentle sprinkles. A few steps later we could see a fabulous rainbow.

The whole experience was a gift, given over and over again. Made it easier to accept that walking is now the norm. Running would have been too hot--walking made it feel sooooooo good.


Race for McGee

My muscles.

More to come. I just had to pay tribute to two of the best people in my life.



Tomorrow is the Race for McGee, the 10k my wonderful friends have put together to raise money for the ALS Association.

Last year my coworkers put on the Race for Debbie, a 10k held in Arlington. Before the race, I thanked everyone and said I hoped, with any luck, to be running the race again the following year.

But I won't be running. It's too far. And it's too hard.

I'm trying extremely hard to be pragmatic about this; looking at the positive flip side that says I can still wog, can still work, etc., etc., yadda yadda. But when I drive across the Memorial Bridge on my way to clinic and see a lone woman running; when I remember the strength and energy I had in my legs and my lungs; when I see what I've become without the exercise and endorphins, it breaks my heart. I feel ungainly and unattractive, I miss the ease with which I would stride across the bridge and the other roads that made up my course, I miss the satisfied exhaustion I would feel at the end of a good run.

I am sad I won't again run in the snow with Adam, or on the W&OD with Kendall, or anywhere and everywhere with Lynne. I am sad that the best I can hope for is finding an outfit that hides my ugly body, my walr-ass.

ON THE OTHER HAND, I'm still here, and "fat is good for ALS." Hell of a consolation, but I'll take what I can.

A special note of thanks to Jenn, visiting from Orlando for the race. No one can talk to you for five minutes and stay feeling sad. You came at just the right moment and turned me around. I love you.


Thank you, dearest Tom, for sharing this with me:

Big Rocks

A professor stood before his Philosophy class and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and proceeded to fill it with big rocks. He then asked the students if the jar was full. They agreed that it was.

So the professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles, of course, rolled into the open areas between the big rocks. He then asked the students again if the jar was full. They agreed it was.

The professor picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He then asked once more if the jar was full. The students responded with a unanimous - - yes.

The professor then produced two cans of beer from under the table and proceeded to pour them into the jar effectively filling the empty space between the sand. The students laughed.

"Now," said the professor, as the laughter subsided, "I want you to recognise that this jar represents your life.

The big rocks are the important things - - your family, your partner, your health, your children, your friends, your favourite passions - - things that if everything else was lost and only they remained, your life would still be full."

"The pebbles are the other things that matter like your job, your house, your car. The sand is everything else - - the small stuff."

"If you put the sand into the jar first," he continued, "there is no room for the pebbles or the big rocks. The same goes for your life. If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you.

Pay attention to the things that are critical to your happiness. Fall in love. Spend time with your friends. Take your partner out for a meal. There will always be time to go to work, go to the gym, give a dinner party and clean the car.

Take care of the big rocks first - - the things that really matter. Set your priorities. The rest is just sand."

One of the students raised her hand and inquired what the beer represented. The professor smiled. "I'm glad you asked. It just goes to show you that no matter how full your life may seem, there's always room for a couple of beers!!"


Latest FVC reading

80%. Dammit.

They say not to worry, it's still within normal range. But. It's 10 points lower than the last one.

I will get my head around this at some point, but right now I will confess to being a little freaked out.


Me vs.....

THEM wrote the court that THEM would be on an extended trip and couldn't make an appearance and THEM want to contest my claim about THEM not finishing the work THEM were paid to do. So now it'll be me versus THEM in a stupid trial.

The pity party part of me is whining "why does this kind of thing always happen, why can't it just be easy and work out," but one thing I have learned is that it doesn't make any difference at all. Some people are just total shits and don't care.

I am very frustrated. And it's making me twitch like crazy.


Me vs Them

Tomorrow, 10:30AM, hopefully to recoup my (as they said in Regency England, not in today's urban dictionary) blunt. I will go in armed with narrative, timeline, photos, adrenaline, and some little bit of anxiety.

Since I cannot, please cross your fingers for me. My deepest gratitude.


I seem to have a new reader from the west coast. Who, I wonder.

The newest

and latest buzz....for your perusal, if interested. I am cautious and guarded and skeptical and cynical. Oh, and ever hopeful.

License plates of the day


This brought a smile to my face. Who can guess why?


Follow up

Maybe I should have offered to teach them.

Next time.

Ranting. Sorry. No, I'm not sorry.

I had a hair appointment today in downtown Fredericksburg. It being a nice day, I knew there would be limited parking. When I got to the salon I was delighted to see a spot close by. As I was parallel parking on the left side of the street, I saw a white SUV parking in the handicapped spot across the street.

Parallel parking for me is no easy task -- it is harder and harder to turn the steering wheel under certain circumstances. I was there, turning the wheel with my left hand and holding it in place with my right when I saw the driver of the SUV and her passenger get out and begin walking up the street. The driver and her passenger, both high school girls with no visible handicap, meandered up the street to do some shopping. I finally parked the car and was struggling to unhook my seatbelt -- another difficulty in recent days. I finally got out of the car and started toward the girls, hoping I could catch them. When I was about a half block away I called out to them. The driver turned and I asked if she was handicapped.

Her response was, "no, but I don't know how to parallel park."

I said, "learn." I turned on my heel and stormed back toward my car and the salon.

Who are these people that they feel they can park anywhere they want just because they haven't learned how to parallel park? What have their parents taught them? If not parallel parking, what about right and wrong? I am technically handicapped and could get a permit tomorrow if I chose. I do not choose because I can still walk and I would prefer leaving the reserved spaces for those who need them. The callousness and disregard evidenced by these two girls is appalling.

Great graphic

This is the race t-shirt graphic. I love it!! Thanks Tam for being so creative and for being such a good friend.


It's 10:15 AM on Saturday morning. I am drinking a nice cold lime-enhanced Corona light. I think I deserve it!

I got up at 7:15 AM and headed to Pratt Park for a "wog." I was determined to do five laps (5.5 miles), walking, running, any way I could. It was horribly humid so I knew would be doing a lot of walking.

I started out walking and felt really great. There was a little bit of a breeze and it was slightly overcast -- all good things. After I had walked a little bit I tested my running legs. So far, so good. The course is part dirt/gravel path and part paved trail. I alternated between them as I alternated walking and running. There was a time when I would have tried to push myself to work a little harder, but today I gently accepted my limitations. Just another adaptation, like so many others.

There were a lot of people out today so I wasn't alone. As I made my way around the course, however, I was struck with a feeling of loneliness. I miss running with my friends. I feel like I've lost touch with them--Lynne most especially. We're still in touch, but there's that element that is borne of long runs and accompanying conversation that is missing.

As I finished my final lap I passed the swing set... and impulsively ran over and went for a little swing. My walr-ass just barely fit, and I had to hold the chains with my elbows, but I did swing for a few minutes. I'm sure I looked like a fool, but I didn't care. I wish I'd had someone to push me!

I got in my 5.5 miles. It took me almost 2 hours. I'm trying not to think about that.

Tomorrow is support group Sunday. It has been some time since I have seen everyone and I'm looking forward to the meeting.

I am attaching today's "Pearls Before Swine" strip because I thought it was hysterical. You'll have to forgive my very odd sense of humor.Hope everyone has a great weekend.


Friday, finally

License plate sighting: "Lisa's Ex"
I wonder what the story is behind that one.

As I do every Friday morning, I listened to NPR's StoryCorps. This morning's story was very inspiring. Take a listen. I hope that link works; if it doesn't, go to this site and "listen now."

I hope I'm as strong as Dottie.


Fin (pretend this is the end of a foreign film)

I guess it could be worse. One day suspension, to be done tomorrow when she wasn't going to be in school anyway. Hopefully this will satisfy anybody's questions about discipline.

I'm still mad as hell she had to undergo this but, as with any situation, we have learned a lesson from it.

Next chapter...

Not one of my virtues

No word yet from the school. It's trying my very limited patience.

I don't trust "no news is good news."

I know, I know. I will calm down.


Odd It Eze

My odometer has three settings: trip A, trip B, and overall. Every single time I get gas, I reset trip A and trip B. Each morning when I leave home, I reset trip A; likewise, I reset trip A when I start for home. Generally speaking, I average about 52-53 miles per gallon on my 52 mile commute (each way). If I keep non-commuting driving to a minimum, I can go back and forth to work all week on one tank of gas and still have some to spare.


There are certain landmarks I notice during each commute. From my driveway, I must drive 17 miles in order to see the Marine Corps Museum looming in front of me. The entrance to the HOV is at 20.6 miles. The exit for the Beltway is at 35 miles. At 47 miles I have reached the exit for the Memorial Bridge.

On the return trip I only notice the Marine Corps Museum, this time in the rearview mirror at 35 miles. I always smile when I confirm the math works and I realize I have only 17 miles to go to my driveway.

I know, I've totally lost it.


Do you remember the song "Amy" by the Pure Prairie League? When I was out on the boat with Wendy and Mike on Saturday, this song came on the radio. I am 50 years old and didn't realize until Saturday that the title was "Amy." I can't even begin to tell you what I thought the title was, but I've had it wrong for decades. I can't believe I'm even admitting this.


Cecilia and I are dealing with a situation at her school. A couple kids have been bullying her and, unfortunately, her attempt to repel an antagonist was perceived by a teacher as hitting. It wasn't but we have to go through a process in order to resolve this. Please send all your good energy Cecilia's way.

There's a lot more I could say, but prudence demands I keep my mouth shut. Suffice it to say I am outraged.


Don't make my mom isn't pretty....


Oh baby

Just thinking how yummy it would be if there was such a thing as ice cream that was a little bit chocolate and a lot marshmallow and caramel. That would be totally heavenly and decadent and I would eat it every day.

No brains this time.

I broke down and bought a dress, even though it had a zipper. I will make sure to wear it only when Cecilia is available to help me! The geometric pattern helps to disguise the walrus within, and it is delightfully comfortable.

Saturday morning I girded my loins and got out to Pratt Park for a 4.5 mile run. Again, it wasn't pretty, but it wasn't horrible. As long as I can, I will

I went out on the boat with Wendy and Mike on Saturday we had such a wonderful time -- I can't remember a more enjoyable afternoon in a very long time. The weather was perfect and, except for the debris in the water leftover from all the rain, the river was lovely. All the debris forced us to move at a more moderate pace -- poor Mike was about ready to go crazy! As we made our way back he was able to open it up a little bit, but not for long.

As I sat on the boat and looked at my sister, I was overcome with a flood of affection; I looked at her profile, the profile I have known for the last 48 years, I saw how happy she was, I saw her pretty face, and I was happy to see her happy. I will carry the memory of that moment in my mind forever. I do so love my sister.

One not so pleasant aspect of that afternoon was when I tried to use the boat's bathroom. Those little tiny rooms are not designed for people who suffer limitations (and have walr-asses). The workaround was that Wendy closed the door (hatch?) up above which allowed me more freedom of movement as I was able to use the entire area below in complete privacy. More I will not describe.

Sunday I went over to Kenny and JR's for a lovely visit. During our conversations, I was struck again with a wave of affection. Their faces, so familiar and so comfortable, are faces I love. I actually interrupted them to tell them so. I think it's important -- not just for me, but for everyone -- to tell people what they mean to you.

When I got home, I immediately went to my serenity room. I can't believe how much I love this little square on the planet.

I have never been able to grow and have always longed for long, pretty fingernails. This falls under the category of "be careful what you wish for." Now that I am losing hand strength, my nails are growing like crazy. In fact, they had grown to a point where I could not wash my face -- even with the little blue friend -- without scratching myself. Unable to clip my nails, I called last night on my neighbor who came without hesitation and gave me a front porch manicure.

My cyber buddy, Scott Crawford, who is listed under the blogs I follow, has kindly posted a note about the upcoming race. He is really a darling. Thank you, Scott, for your support.

Well, that about wraps things up. In the spirit of telling people what they mean to me, let me tell you now I am grateful for all you. I am rich beyond measure because you are my friends.


Some interesting images

Until I have time to punch out a longer post, please enjoy more images of my brain. The ALS doesn't show, at least, not that I am aware.

My CST fibers:
My corpus callosum:
My brain, in color:

Whew. Without a mic, this typing business is tough. To be continued...



License plates I saw yesterday:
  • ALS X2
When I saw the first one, I immediately called Ned and then Kara to tell them I had found Ned's and my car. I think they both think I'm a little bit nuts. I think they're right.

When I saw the second, I wondered if the owners of the car had the initials ALS or if they had been twice affected by ALS. There was also one of those ribbon magnets on the back, but I was not able to make it out. I wonder. I hope it's the former.

My favorite pants in the world are my pajama pants. They are cropped, soft, and fabulously stretchy. Sometimes I even wear them in public. After all, why not?

I finally returned phone calls to a couple of people. Part of me felt very badly for not having been in touch sooner, but part of me understood I needed a down time. I don't want to ignore my friends and I don't want them to worry about me, so I'll try to be better about communicating. Maybe.

Work work work. Busy busy busy. Enough said.

There is an incredible, soft, soothing breeze coming through my windows. Rumbles of thunder and the sound of rain add to the peaceful feeling I'm experiencing. It's a perfect night.

Pleasant dreams...


In the Long Run

In the Long Run
Tom Brooks Wanted Folks To Stay Active and Stay Close. For 200 Miles in A Journey That Bears His Name, They Do Just That.

By David Montgomery
Washington Post Staff Writer
Monday, June 1, 2009

Strange doings after midnight in downtown Cumberland, Md.: Dozens of people in shorts and sneakers with little lights strapped to their foreheads pop out of the Holiday Inn. They look like fireflies in the night. They pose for the obligatory goofy picture beside the statue of the mule that marks the beginning of the C&O Canal towpath. And they're off!

One is carrying a rubber chicken. One has a T-shirt that says "Run. Bike. Don't Sleep. Run." Destination: Bethesda.

What a wonderful night for a 200-mile relay called Tom's Run. Actually it takes a night, a day and a morning.

"See you at mile 54!" Jason Briggs, a chief warrant officer in the Coast Guard, shouts after his teammates, one of whom is towing a cooler of supplies behind his bike. "I'm gonna sleep in the parking lot a little bit."

Stamped on Tom's Run Relay T-shirts is the whimsical logo of a pair of thick glasses, a nose and a mustache. That's Tom.

All that's left of him.

Plus, this seemingly masochistic folly that is at once a living, sweating legacy and a meditation on community.

Tom, are you out there somewhere? Can you freaking believe it?

Tom Brooks was an obscure but beloved chief warrant officer in the Coast Guard. In 2004, at 49, he died of amyotrophic lateral sclerosis -- Lou Gehrig's disease -- six years after his diagnosis.

A few months before his disease was diagnosed, he helped organize a bike-run relay down the towpath to encourage fitness and team-building. It was small, just a few teams. The next year, his colleagues dubbed the event Tom's Run Relay, and Brooks did a turn in his motorized wheelchair.

This year, Tom's Run has grown to 29 teams and almost 500 participants, the most ever. The course follows the towpath from Cumberland to Fletcher's Cove, then veers off to finish on the campus of the Uniformed Services University of the Health Sciences on Jones Bridge Road.

But here's the thing: A decade later, hardly anyone on the trail, including the Coasties, knew Brooks. Tom's Run has floated like a red balloon across many degrees of separation from its original inspiration, expanding and adapting to include other military services, civilians, even several children and a newspaper reporter.

It's like those benches you see with a little metal plate stamped in memory of someone you never heard of. All you know is that person must have shared your love of this same spot. Each time you pass, the name becomes more familiar, finds a home in your routine. Isn't that immortality?

* * *

Entry fee: $5. At the pre-run pasta dinner at the Holiday Inn on Thursday night, race director Roger Butturini, a retired Coast Guard lieutenant commander, delivers what he calls "the tell." It's the creation story of Tom's Run, the legend of Tom Brooks -- how Brooks urged colleagues at Coast Guard headquarters to stay active. He wasn't a super-athlete, just another Washington office worker with an outgoing personality trying to be healthy. He was a webmaster for the service when he got sick.

"This activity has evolved as a celebration of that philosophy," Butturini says.

"This guy's legacy is he created something that folks can't stop doing," says Lance Abernethy, a Coast Guard master chief. On his team, the men run in dresses, an extreme form of team-building.

What would Brooks make of all this? Last year his widow, Debra Brooks, came to greet the teams. Now she is on the phone from Wisconsin, where she is taking care of her mother.

"He would be so proud that it's still going," she says.

The couple, who met in church in Westminster, were dating when Brooks received his diagnosis. He gave her the option of backing out, she says. They were married in 1998. Brooks had two children from a previous marriage and got to see two grandchildren before he died, she says. "He was my strength. I miss him so much, even now."

At the finish line of Tom's Run in 1999, according to a story in U.S. Coast Guard Reservist magazine, Brooks told the runners: "The Lord says to be thankful in all things, but it was very difficult to do that at first. . . . But when I think of my friends and family here, then I'm reminded of many day-to-day blessings and I can be thankful in all things."

Perhaps a handful of those running know Tom said this, but his spirit of taking comfort in community infuses the event, which is deliberately not called a race.

So instead of having a starting time, Tom's Run has a finishing time: 11 a.m. Saturday. Teams start early Friday any time after midnight, and run at their own pace. The goal is to finish as close to 11 a.m. Saturday as possible. Each runner must have a bike escort. Runners can swap in for tired teammates at 31 exchange points along the route. Most teams have 10 to 25 members. They create elaborate spreadsheets of who runs when and where, and which cars will deliver them and pick them up. For 36 hours, nomadic caravans wander the hills and dirt roads of rural Maryland, making rendezvous, getting lost.

Now it's 5 a.m. Friday, and if the National Capital Consortium of military medical residency programs is wondering where its director is, well, Jerri Curtis is splashing through mud puddles beside a pale-green meadow of hip-high grass, being serenaded by a choir of bullfrogs. The sky is just beginning to glow in anticipation of dawn, and the cone of her flashlight beam defines a mist so fine it is imperceptible on the skin. She's covering 11 miles on this leg, and she'll run again in about 22 hours, at White's Ferry.

"Oh, this is just glorious," she says. "We all have such stressful jobs. Out here, the BlackBerry doesn't work so well."

Curtis didn't know Tom, nor does she know well anyone who did. For her team of mainly neonatologists and pediatricians -- called Midnight Delivery, with a stork carrying a baby as an insignia -- this annual adventure is to build office camaraderie.

They are overtaken on the path by Alix Paye, a graphic designer, and Mike Reese, an administrator at Johns Hopkins University, of team Boh Legged -- so named because a cooler of National "Natty Boh" Bohemian beer is stowed in the support car with other energy drinks. "Tom's always been this mustache and sunglasses on a shirt," says Reese. And yet, "you feel like you're part of a bigger movement."

Shortly after 2 p.m. Friday, in a grove at Four Locks, mile 76, most of Butturini's team, Mixed Nuts, is having a cookout, and swapping Tom's Run war stories -- the time a biker plunged into the canal; the time they saw a "flying train" in the dark of night and thought they were hallucinating, until they realized the train was rolling on tracks elevated above the trail.

The team called Tree and Stump Removal arrives with Army Reserve Sgt. Chris Malloy running. Three years ago, Malloy was deployed in Iraq during Tom's Run, so he ran a satellite leg on his base. After covering his assigned distance, he e-mailed his time to his teammates, who waited the correct elapsed time before sending a runner off on the next leg.

"It was a way to feel like I was not forgotten while overseas," Malloy says. He doesn't know all the details about Tom, but he's glad the event raises awareness about a terrible disease -- "Was it Parkinson's?"

* * *

Shortly after daybreak Saturday at Swain's Lock, mile 170, everyone is punchy with sleep deprivation, including me.

I heard about Tom's Run from a neighbor at a dinner party last year. He gave us the tell. Three families on our block joined Midnight Delivery last year, and again this year, with the parents running a leg or two and the kids riding. Several families on other teams along the 200-mile route do something similar.

I'm in the run again with my daughter Lily, 10. I wonder if she knows who Tom was, so I ask her. "He died of Lou Gehrig's disease when he was 30 or 40," she says, then adds: "I like a relay race where you don't have to be fast, you have to be your planned time." She rode this same leg with me last year -- 7.9 miles to Lock 10.

This year she's so confident on her seven-speed bike. I'm the one who cringes as we pass Great Falls. One false move, and she's over a cliff. "This is the only time I ever want you to ride in the middle of the road," I say.

An Airborne Ranger team zooms past us, and we overtake runners from two other teams.

Around a bend, the sun has crested the tall trees on either side of the canal. Sturdy, golden, straight-edged bands reveal themselves in the light mist, connecting the sky to the trail.

"You don't usually see sun rays!" says Lily, and she picks up speed, pulling farther and farther ahead. I struggle to keep up, but can't. She is disappearing into the future through a corridor of sunbeams.

So yeah, at that moment, I think of Tom, somewhere out there. I remember him as an idea, not as a person, and how through a chain of circumstances, he made this moment possible. I wonder if this moment will outlive me, in Lily's memory. I think that's why I'm running Tom's Run.

* * *

Everything about the finish is low-key -- befitting a race that is not a race. The finish line isn't even marked. The participants gather in front of the university and cheer each new arrival. Everyone gets a medal with the iconic image of the glasses and mustache.

A team called Sexy Beasts, made up mainly of current and former cross-country runners from Robert E. Lee High School in Springfield, arrives at 10:29 a.m., for a time of 23 hours 29 minutes, since they started at 11 a.m. Friday. But Butturini rounds up their official time to 24 hours, since the finish cannot be earlier than 11 a.m. Saturday. It's believed to be a record time for an event where no records are kept.

The rubber chicken finally concludes its 200-mile, 34-hour-49-minute journey in the hands of John Trentini, a medical PhD student in the Air Force. His team used the chicken as a baton at each exchange point. He's also carrying a McFlurry, obtained at the drive-through window of a McDonald's on the way to the finish.

Trentini's team -- called Tom, Dick and Sweaty -- wins the prize for the most newcomers to the Tom's Run community: All 19 members are first-timers. They had been hearing rumors of Tom's Run for years. "We'd say, 'What the heck is Tom's Run?' " says teammate John Pesce.

Now they know. The Tom in their team's name stands for Tom Brooks.

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