Thursday, June 30, 2016

Race for Chris Rosati: Part 2

Emerald Isle Marathon Race Report

Still bleary-eyed and sans coffee, I took my place at the starting line at 5:55am alongside two handcyclists. The race director introduced us to the nice police officer who would lead us out as we kicked off the race. She asked how long I expected to take. I guessed 4:30 or so based on my last marathon time.

“Sounds good,” she said. With that, she gave me a few pointers on the course, reminded me to move to the right when runners overtook me, and wished me luck.*

[*For the record, this how easy it is for races to allow disabled athletes to participate in most races. More to come on a future post…it’s percolating, unlike my coffee^^]

After the national anthem, the horn blared and the three of us took off. One handcyclist was waaay faster than the other two of us, but he races every year and knows the course (again, not a problem). So the cop car stuck with us, casting an eerie blue light show against the pine trees in the pre-dawn darkness. Eventually, they delivered us into a neighborhood and we followed the signs from there.

The course is basically flat throughout so I just cruised along, looking at the houses, thinking about my chosen honoree for this race, Chris Rosati.


Chris has accomplished so much…not just in spite of his disease, but with it. That he’s dying from ALS forms the backdrop for his story, it sets the stage – but Chris poured in his creative vision, wrote the script, choreographed the scenes, and injected just the right publicity to bring attention. He pivoted his marketing genius towards his new cause – not ALS, but kindness.

The reason the Krispy Kreme heist worked is because it wasn’t just a publicity stunt designed to get attention for a product, a company, or even the man running it. The goal was to bring joy to others, strangers – but the realization that a dying man was behind the caper sent it viral while touching people deeply. His line I carry with me every day: “If I can’t impact people, this whole thing is a waste.” Yep.

It’s also not lost on me that the escapade provided the sponsors to launch even bigger projects. Hmm…

It was about Mile 5 when the lead runners caught up to me. The sun was up, but the wind off the ocean kept it cool. Absolutely perfect running conditions. Thank goodness I was in my trike or I would have cried out of sheer jealous torment.

I kept up with some of the faster runners, but I had no idea of my pace since I don’t wear a watch anymore. What’s the point? I don’t race for PRs and I’m an age group of one. I race because I love the challenge and the camaraderie of the race environment. It’s the one place I don’t feel pity behind the stares I always get. I feel admiration, encouragement, and like I still belong.

Porta potty love

Somewhere around Mile 11, I heard one of the runners say “7:47.” Wait, that can’t be a split, right? And then I realized it must be the time. I did some “trike math”…which means it took about 2 miles for me to calculate that I was dominating my last marathon time.

Photo cred: Allison Matlack Photography
True love is your husband standing beside a porta potty at Mile 14. My heart swelled when I saw him, in just the same way that I see Chris looking at his wife and daughters. ALS can’t touch that. Sure, it can try – it can change our lives and mess up our plans, can stress us out and make us crazy sick with worry and sadness, but as long as we show up every day to reinforce and build each other up, fight for each other, admit when we’re wrong, and put love first in our decisions and actions – it can’t win. We win. It’s not even close.

That’s what I was thinking. What I said was, “Did you see the time?!”

“Yeah, I almost missed you. You’re crazy,” he responded smiling as he helped me out of the trike.

Choose Joy   

Shortly after my pee break, I heard a voice yelling at me from somewhere on my left. “AAANDREAAAAA!!!!!!” I caught just the slightest glimpse of my friend Erin sprinting towards me, waving her arms, before I crossed the intersection.

A better friend would have stopped. Erin is an Ironman though, and I figured she’d understand. Erin is one of my newer friends. We connected through Swim Bike Mom’s triathlon forum (of course) and she and her daughter Sydney had come halfway across NC to see me race. Erin had planned to run with me, but was nursing a foot injury.

Erin’s motto is “choose joy” which Chris would obviously agree with. Unless you’re dealing with clinical depression or a devastating loss, it’s like the magnet on our fridge says ------->

Note to Self

The rest of the race was pretty uneventful. Most of it was spent pressing against a headwind on the path that parallels Route 58 on the way back to the start line. It had warmed into a beautiful sunny day so I could have triked forever.

There is so much more that I could say about Chris, but I think the best way to sum it up is to watch this video that aired this week on CBS This Morning. It’s a segment called Note to Self and you can watch others, mostly celebrities, talking to their younger selves about the life lessons they will learn.

If you want to know what a profound effect this man has had on me, just know that I was nodding throughout this piece. It didn’t shock me, scare me, or move me to tears. It sounded like facts -- wisdom I have absorbed from him and other ALS warriors. I know I haven’t really been tested yet, but I am ready for battle.

Time: 3:42:28

Erin & me post-race (when she caught me ;) )

Friday, June 24, 2016

Race for Chris Rosati: Part 1

This post is part of my 2016 quest to do 12 marathons, half marathons (via trike) or triathlons to honor people with ALS who have been inspirational to me. This was really Race #3 but got out of order because frankly there's just a lot to say about Chris.

So after we returned from Turks & Caicos, Shy Tuna and the idea of writing a book about courageous people with ALS kept swishing around in my mind. A week later, we had brunch with my race director (/marathoner/breast cancer survivor/rockstar) friend Amy and her daughter Julia. I pitched my idea.

“Do you know Chris Rosati?” she asked.

“No. Who’s he?” I said. When she told me, I stopped with the fork halfway to my mouth. I knew instantly that I'd found another story to tell. Hell, his could fill an entire book (which I hope he'll write one day).

When Chris was diagnosed with ALS at the age of 39, he was VP of marketing for a health care company in Durham, NC. Always active, he'd been an avid soccer player and a triathlete(!) when he began noticing a peculiar weakness opening a jar.

Although he continued at his job for another two years, he was restless, impatient. He raised eyebrows by walking out of meetings that didn't seem worth his time (News & Observer, 8/23/14). Time he was running out of. So, he quit.

Shortly thereafter, he was invited to give a talk at his old high school. He spoke without notes, without preparation, but got everyone’s attention with his opening line. “I told them I was there because I was going to die, and this has given me a perspective on life,” he said.

He said his only regret in life was having worried too much. For some reason, he brought up a funny dream he’d always had to steal a Krispy Kreme truck and give away doughnuts like Robin Hood.

And then he did just that

Capitalizing on the national and local media attention, Chris created a nonprofit organization, the Inspire MEdia Network. He launched the BIGG initiative (Big Idea for the Greater Good) to encourage young people to submit their “most creative, bold and uncommon ways to enrich the lives of others.” Inspire MEdia picked 7 winners, the students filmed themselves carrying out their ideas, and held a red carpet event to show the results. Some of the projects included:
  • Treating homeless strangers to a fancy dinner
  • Hosting the “Wheel of Kindness” at a mall where adults had to do the random act of kindness that the spin landed on (e.g. hug 10 strangers)
  • Dressing up as superheroes and visit a children’s hospital
  • Setting up a booth for adults to color like kids.

Chris' next idea was to test the butterfly effect -- the theoretical concept in physics that a butterfly beating its wings can eventually lead to a hurricane. He saw two girls at the table next to him at a restaurant and gave them each $50 to “do something kind.” The sisters, aged 10 and 13, decided to throw a party for a village in Sierra Leone to celebrate being Ebola-free (their father had served there in the Peace Corps). Chris learned of the celebration when he got an email with this photo attached:

Inspire MEdia’s newest initiative is to create BIGG Clubs in schools. The kids come up with projects to make their community a better, kinder place. For example, one club made care packages to say thank you to bus drivers and cafeteria workers. The projects empower kids to "love deeply, to pursue their dreams, and to help others in the process."

I can’t think of a better legacy. 

I could go on and on about his creative genius..the black-tie gala that included a lip sync battle...his snappy dressing ------->

But the best way to understand why he does what he does, is to see how he looks at his family (kudos to my wonderfully talented photographer friend, Tamara Lackey, for capturing these images!).

Chris has had a rough 2016. After putting off trach surgery twice, he is recovering and adjusting to his new reality (again). If you don't know what a trach is: first, count your blessings. Second, read on because Chris, as usual, has the best explanation:

"That machine feeds air into a hole in my neck. If the tube comes out, I have about two minutes. And while you don't notice that you cough slightly several times a day to clear your lungs, I cannot. So about 2-6 times an hour, someone has to basically vacuum my lungs. That means someone has to always be within earshot."

Third, count your blessings again.

Up Next:

My race report from the Emerald Isle Marathon as I attempt to do justice to all that Chris Rosati has taught me.

Happy Friday!

Tuesday, June 14, 2016

My birds!


Yes me, the rebellious turned-18-and-got-TWO-holes-in-one-ear-and-THREE-in-the-other and didn't-drink-til-I-was-21 me.

May 29th marked my two-year anniversary of being diagnosed with ALS. We didn't understand until August what the doctor had told us, but still, that is the date that clinical trials will use to exclude me if I live long enough next year so that's the date I'll pick.

Two years is a big deal. The average life expectancy is 2-5 years. Jon Blais lived two years. Lisa lived two years. My friends Jillaine & Jodi's mom lived less than a year.

So two years felt like a giant milestone. Or rather, a deep breath slowly being exhaled. The fact that I'm still doing marathons and triathlons?? The fact that Team Drea has raised $110,000 for ALS research?? Those are things I never could have allowed myself to contemplate in 2014.

I'm finally letting myself accept the other maxims of ALS beyond its life expectancy -- that this disease is incredibly weird, affects everyone differently, and progresses at wildly different rates. I am still progressing, mind you. I walked a city block yesterday and it felt like my limit. Yet, I swam 500yds that morning better than I could have two years ago. Who knows. I've given up trying to guess.

Anyway, I digress.

I had been planning to get a tattoo for months after listening to this part of Elizabeth Gilbert's Big Magic on a trike ride:

I know a woman who gets tattoos all the time. She acquires new tattoos the way I might buy a new pair of earrings. She wakes up in the morning and announces, "I think I'll go get a new tattoo today." If you ask her what kind of tattoo she's planning on getting, she'll say casually, "I dunno….I'll figure it out when I get to the tattoo shop. Or I'll just let the artist surprise me."
Now, this woman is not a teenager. She's a grown woman with adult children, and she runs a successful business. She's also really cool, uniquely beautiful, and one of the freest spirits I've ever met.
When I asked her how she could mark up her body so casually and so permanently, she said, "Oh, but you misunderstand: It's not permanent! It's temporary."
Confused, I asked, "You mean, all your tattoos are temporary?"
She smiled and said, "No, honey. My tattoos are permanent — it's my BODY that's temporary. So is yours. We're here on earth for a very short while. I just want to decorate my temporary self as playfully and beautifully as I can, while I still have time."
I love this so much, I can't even tell you.
...I don't want to be afraid of bright colors, or big love, or major decisions, or new experiences, or risky creative endeavors, or sudden changes, or even great failure.
But what to get?

Often Awesome

In 2009, a guy with ALS named Tim LaFollette (from Greensboro, NC) sparked a movement that came to be known as Often Awesome. Tim was 29 when he was diagnosed and died two years later. Thirty-six short documentaries chronicled the progress of his disease and the adventures it spawned -- playing in a band, benefit concerts for ALS TDI, a wedding, friends and family helping with every aspect of his care.

The whole series is inspiring (and heartbreaking), but this one and this one are about tattoos. He decided to have swallows from his mother's Quaker songbook tattooed on his arm. His mother (and grandmother) both died of ALS in 1981, long before people understood the genetics of ALS.

In solidarity, the Often Awesome army and strangers began to get swallow tattoos. My friend Michelle, who introduced me to this, has a swallow behind her ear. Even my new (badass!) neurologist has a swallow on his hand.

Traditionally, swallow tattoos are a sign of hope. Sailors would get them because if they saw swallows, it meant land was near and they were almost home.

My Birds

For awhile, I figured I would get the same swallows. But for some reason, they didn't quite seem right. For one thing, I loved the look of the flock in flight, but I wanted to get one for each year living with ALS and it would take quite a long time for a flock to get going. 

In the move, I came across an (unfinished) wedding scrapbook. The illustrations in the book had simple, sweet line drawings of wedding cakes, dresses, etc...and these doves. Aha!

Next, I had to find the right artist because 99% of tattoos freak me out (what is it with skulls anyway? also made the mistake of googling "crazy cat lady tattoos") AND a shop that was uber clean and not intimidating. 

Enter Josh Cecil and Dogstar Tattoos in Durham:

The whole experience was awesome. DP and Julie came (because of course). No it didn't hurt that much, but then I've had acupuncture weekly for two year so maybe I have a higher tolerance for tiny needles. Honestly, the worst part was I had to stay out of the pool for two weeks.

Kinda Love Them

I thought about a couple of different locations (shoulder, ear, back), but I'm glad my dove-ish swallows are perched right on my forearm where I can see them anytime. They look friendly but determined. Serious enough to make a statement but not taking themselves too seriously. They remind me that being brave can lead to beautiful experiences I never could have imagined.

But most of all, there is PLENTY of room left for that flock I was looking to start.

Saturday, June 11, 2016

Race for Shy Tuna: Part 2

Too much for one race report. Catch up here.

Well, one similarity between Shy Tuna and I is that we both spend an inordinate amount of time at the post office. He mails tie dye shirts, I mail care packages to all the Team Drea members before their races. This year, I got smart and bought gifts that fit in envelopes, but I always seem to be mailing them last minute so I'm still always running to the post office...unless I can sucker my dad into taking them for me ;)

Laundry Cart Smackdown & Bacon Bandaids

So, like I was saying, I was feeling pretty confident the week before Ramblin' Rose Raleigh. The race director Amy and I met to catch up and discuss logistics. She was totally agreeable to letting Julie & I swim first, before the race started. This had a couple of advantages: 1) I wouldn't be keeping everyone for an extra hour like RR Chapel Hill, 2) it would be safer/easier for me to swim in the same lane along the side instead of "snaking" through the pool and potentially holding someone up.

I cannot believe I'm openly sharing this pic.
I came back from that meeting feeling totally energized. I decided to dump in a load of laundry using the new rolling laundry cart DP bought. As I whipped the cart around...WHAM!! The cart kept going and I went straight, landing mostly on my face and left shoulder. I tasted blood.

I managed to get myself up, inspect the gash in my lip and call my dad (Reason #4578 why it's nice they're 3 miles away) since DP was at the gym. I ended up with stitches inside my lip and had to eat smoothies, soup, and ice cream for 3 days (somehow my lip magically healed itself enough for me to down a Char-Grill cheeseburger though...)

I wasn't immediately worried about my shoulder. It was a little swollen and bruised, but I figured a regimen of ice packs, advil, and muscle rub would take care of it. But when it was still painful days later, we went to urgent care for x-rays just to make sure no bones were chipped or fractured -- especially since this post was going out.

I didn't handcycle or swim at all that week, which made me anxious. So the day before the race, my mom and I went to the pool to test my shoulder. Instead of pushing for speed, I did two slow laps, careful not to tweak it. It hurt a little, but was tolerable. The best part was that my heart rate didn't spike so I didn't get the panicky feeling I usually get when I start swimming. Could my shoulder injury really have solved my swim anxiety?? Now that would be ironic... I finished my 250yds smiling.

Then things got busy. My college roommate Elizabeth arrived from Charleston, SC. Carissa & Shawn drove in from Columbus, OH. We went to packet pickup and saw a bunch of other Team Drea members that were racing. We had a low key party at our apartment. I finally got to spend time with Fran and Donna of Tri It For Life, and they brought awesome swag (it seemed everyone brought goodies...Elizabeth made me an INCREDIBLE scrapbook from all of her TBTs last year).

So it wasn't until about 9pm when we went out to our cars to rearrange and load the bikes...and noticed THE TRIKE HAD A FLAT!! Did I have a spare tube? Of course not. Why? Because I'm an idiot. Seriously, such a rookie move...

After 30 minutes of pushing, pulling, and YouTube, the tube was off and Carissa and I sent the boys were off to look for a 20" (BMX size) tube. They found a patch kit at Target and the right size box at Walmart with the wrong size tube in it. I'm so grateful Shawn was there. I'm sure DP could have figured it out on his own...buuuut let's just say Shawn provided a calming presence during what otherwise would have become a stressful marital situation ;)

While they were working, I made peace with the possibility that it might not work. It's okay, I'm okay, this will be okay, no matter what. You did the training, that's what matters. By 11pm, the tire was back on with the original tube, patched and reinforced with bacon-printed duct tape. Because bacon makes EVERYTHING better :)

Race Day!

Too soon, we were up and out of the house. It was a chilly 50 degrees for trisuits and swimsuits. I wanted to get there early, since I needed a transition spot as big as a house and we needed to negotiate space for Julie too, plus we were swimming first. It turns out I didn't need to worry...every one of the race organizers came by to introduce themselves and offer whatever assistance we needed. Can we set up by that tree? Sure. Can I trike from the pool to the transition area? Of course.

Still, it was kind of hectic. There was the usual pre-triathlon chaos -- e.g. lines for body marking and internal conflicts of do I need to pee again? -- plus lots of people coming by to say hello and wish us luck. I wanted to chat, but needed to concentrate. I'd never quite set up a transition area like this...trike? coming with me. so helmet too, but not clip shoes. and sandals. plus all the usual swimming gear. walker? no, wait, yes.  My head was going in a million directions. And I was shivering.

As I started down the ladder into the pool, I resolved that this would be my last triathlon. It all felt like too much -- too many wacky logistics, too many accommodations being made on my behalf. Just too much.

And then.


As soon as my head plunged into the water, the world was instantly silent. Mercifully silent. Oh yeah. This is why I do this. That is THE moment I will remember about this race. The silence of leaving behind my trike, my walker, and everything else that I have to rely on to get around on land. I was weightless. Swimming on my own. It was glorious.

So yeah, my swim was great, despite my nose plugs coming out a couple of times. I came up sputtering and that scared everyone watching....oops :)

Photo cred: AE Finley YMCA
As Julie, DP and I walked around the side of the building towards transition, a huge cheer went up. It was the entire rest of the race clustered outside waiting to be called in for the swim. Jen from Endurance was on the mic. It was so incredibly touching. I waved. Everyone cheered again.

Carissa told me later that a woman standing next to her said she was nervous about the swim, but after watching me come out of the pool she said, "if she can do it, I figured I could do it too." Yes, I'll take it. Anything positive coming out of ALS is alright by me.

Transition was fine, thanks to DP, and Julie and I got out on the road to let the whole race pass us ;) The Raleigh course goes through some pretty hilly neighborhoods, but thanks to the pre-race ride Julie, Elizabeth and I did a couple of weeks before, I knew it was doable...assuming the bacon duct tape held, right?

The trike and the handcycle were just plain enjoyable. It warmed up into a beautiful, sunny day. So many people said kind things and wished us luck, which we returned in smiles, thumbs up and "you too!"s. This was ALS awareness of a different sort, one I knew Shy Tuna would appreciate.  Connecting with people, sharing in joy, and living life doing what makes you happy....anyway, regardless. My own love ministry.

Finish Line

...we weren't last!!!!!!!!!!!!

In 2014, it took me 1:32 to walk the run with trekking poles. With the handcycle -- 32 minutes! We cruised in with all the other competitors, which felt great. Just another participant out there doing her thing. I wasn't looking to recreate the magic of that finish line anyhow. I want to preserve that memory just as it was.

I loved celebrating with everyone from Team Drea -- of the ten of us competing, five were first-timers. One was pregnant, three learned how to swim just for this race.

This is really what I love about Team Drea -- friends getting out of their comfort zone, try(i)ing something new, raising awareness and money for research, all because of ALS. Yes, I'll take it. Anything positive coming out of ALS is alright by me.

Time in 2016: 2:04:16
Time in 2014: 3:22:59 (Chapel Hill)
Time in 2012: 1:06:23 (pre ALS)