Tuesday, December 30, 2014

Team Drea Challenge 2015

To date, Team Drea has raised:
$13,016.14 for the Blazeman Foundation 
$2,887.90 for the ALS Association
 = 
$15,904.04 dedicated to finding a cure for ALS and caring for those with it.

Thank you.

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Over the past few months, I've had several people tell me that my story has inspired them to sign up for a race they'd previously written off as impossible. A triathlon. A marathon. Even an Ironman.

Carolina Half 70.3
I LOVE hearing this. There is no feeling in the world like the moment you cross the finish line of a race you've worked so hard for and weren't at all sure you could finish. But the best part is looking back and realizing it was really the daily grind of training, staying committed, overcoming setbacks, prioritizing your health, breathing hard, pushing through, sweating and just being alive -- the journey itself -- that was actually the reward all along. That post-race high can just be enough to crack open your accepted image of yourself (with all your self-imposed limitations) to see your life and its possibilities differently. It's emotional and addictive and quickly becomes something you want to find over and over again.

For me, I hit those highs at the Yuengling Marathon in 2012, the Carolina Half 70.3 in September 2013, and the Ramblin' Rose triathlon in October 2014. I want another one so bad that sometimes I dream about it.  But with ALS, I have to pull back from all that I want to do and conserve my strength. I am putting together a race schedule of sorts for 2015 which I'm excited about, but it's not the same.

So when my friends and family say I've inspired them to go out and train for a race, that's what I'm thinking about. I'd love to be out there doing it myself, but since I can't, it means a lot to know that I'm playing a small part in encouraging you to seek out those experiences for yourselves.

That is the heart of the Team Drea Challenge.  Here's how it works:
  1. Commit to a swim, bike, and/or run race in 2015 that represents a major challenge for you. It could be anything from an Ironman to your first triathlon or 10k.
  2. Use your race as a fundraiser for the Blazeman Foundation. The BMF fundraises for research to cure ALS in memory of Jon "Blazeman" Blais, the first (and only) person with ALS to finish an Ironman unaided. You are asked to fundraise at least $250 using your own page (I can help) or directing people to mine. Beyond the obvious goal of raising money to find a cure for ALS, fundraising through your friends and family can be a huge boost on race day -- mentally drawing on their support when you're struggling and celebrating with them afterwards. It's also not a bad way to hold yourself accountable during training...
  3. Sign up here by January 15th so I know what you're doing and when it is. It's okay if I don't know you (yet).
  4. Then…get out there and enjoy the journey.
In return, I will send some encouragement along the way and a little care package ahead of your race. You'll also have the opportunity to do a guest post or race report on this blog to share your experience. It isTeam Drea, after all :)

I know this challenge isn't for everyone. Many of you have young children, busy jobs, health issues, other priorities.  I get it and that's totally fine. But if you've been thinking about a big goal this year and just need a reason, consider yourself nudged :) In the immortal words of SBM:

"You can do this. You GET to do this."

Wishing you a year of peace, happiness, and good surprises in 2015,
Andrea

Thursday, December 11, 2014

Narratives

From one of the ALS-related Facebook groups I follow:

"Everyday we grieve a new loss...the ability to enjoy a family dinner, the ability to talk to hear the words 'I love you,' the ability to receive a hug because their arms are too weak to lift up enough to wrap their arms around you, outings because they cant hold their head up or have the strength in their legs to walk anymore…"

Oof. It goes on to land on a positive, carpe diem note, but the message is just so consumed by sadness. Posts to these groups (often caregivers, family members, friends, and sometimes the pALS themselves) frequently use words like: horrific, terrible, tragic, devastating, heartbreaking, awful, cruel, etc. to describe ALS.

My mind was going down a similar negative road a couple of weeks ago when I posted that semi-cryptic message on Facebook about having a rough day. I was in a funk all day about how hard it was getting around our office -- navigating the parking garage, falling 5 minutes after arriving and security insisting on writing up the "incident," the walker getting snagged on rugs and sidewalk cracks, trying to figure out how to pull open the door and then get through with the walker (just picture that for a second)…then going home and working through the wills paperwork with DP answering questions about life support, organ donation, and burial v. cremation. It wrecked both of us and the migraine that had been stewing all day finally blew up and I had to take a nap at 9pm.


But when I woke up a couple of hours later and looked at everyone who bought Team Drea shirts and started sending sweet, supportive notes and messages on my wall after I posted about my rough day, the funk started to lift.


In trying to sort out my emotions, I realized that I just can't internalize all the negative words. This disease impacts almost every single thing I do during the day and is what I think about most. I just can't let those depressing adjectives color every one of my daily experiences. I just can't handle the narrative.

Plus, my life doesn't really fit that narrative anyway. ALS sucks and I wish with all my heart it would disappear, but I can't discount all the love, support, and amazing experiences that have happened this year because of it.

Let me tread lightly here. I am NOT criticizing or passing judgement on the FB posters. Everyone is entitled to their feelings -- and I believe they are expressing the truest, deepest of all raw emotions in their words. They have all been through so, so much and they have endured much later stages of the disease than I have. 

Besides, everyone has good days and bad days when they're trying to cope.

Quiet
BTW, go see Theory of Everything!

I keep coming back to a TED Radio Hour I heard recently entitled Quiet. One story is about a man named John Francis who voluntarily stopped talking for 17 years. He realized he was speaking defensively all the time, listening just long enough to know what he thought the other person was going to say, then tuning out to focus on his rebuttal. His story is about learning to listen: to others, to nature, to himself, and to silence.

So all this time I've been worrying about losing my voice and this guy chooses not to talk??

But then I realized maybe it comes down to choice after all. I can't choose not to have ALS, but I can choose the narrative I tell myself about it. Instead of what I said in October:

[As ALS progresses], their minds stay fully intact, forcing them to watch as they lose the ability to walk, talk, eat, swallow, and eventually, breathe.

I can try to remember the words of my pal Jim Valvano at the end of his 1993 ESPY speech, just weeks before he passed away from bone cancer:

"Cancer can take away all my physical abilities. It cannot touch my mind, it cannot touch my heart and it cannot touch my soul. And those three things are going to carry on forever."

 Thanks for helping me see that, friends :)


Thursday, November 20, 2014

Walk to Defeat ALS "Race Report"

To date, Team Drea has raised:

$11,959.64 for the Blazeman Foundation 
$2,887.90 for the ALS Association
 = 
$14,847.54 dedicated to finding a cure for ALS and caring for those with it.

Thank you.

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I'm learning that it takes me a while to get these blog posts out.  Partly, I do a lot of editing to make sure  it's really what I want to say, but also I am trying to keep the rest of life going, visit with family and friends as much as possible, and DP and I have embarked on what I'm calling The Grim List 2014: wills, disability benefits, handicapped tags, remodeling estimates, etc. etc. so we can start fresh in 2015.  Fun stuff ahead and I just don't want the worries and what-ifs hanging over us.

Anyway, sorry for the delay…not a reflection on how awesome the day was!! :)

The Walk

….was COLD: low 40s, grey skies, and 18mph sustained winds put the windchill in the 30s.  Still, we had 45 people show up.  Troopers, all of you!


It was kind of like a wedding -- family and friends from so many parts of our lives: our parents, DP's brother, sister and her kids, his aunts, uncles, cousins, and grandma from his dad's side, friends of mine from childhood, high school and grad school, friends of ours from college, triathlon friends, work friends.  So everyone knew someone, but not very many someones.  It was great for us to see everyone meeting and getting to know one another.

The walk was literally on the paths around the Washington Monument grounds.  I opted for my trike so I wouldn't have to worry about falling, walking too slowly, or not being able to visit with everyone.  We went around twice and that was enough for ME (the troopers would have kept going, I'm sure).

Thanks to Betsy (^ bottom right) for the photos!

Then we descended on our seemingly-little-but-infinitely-expandable house.  We had almost 40 people over for a feast catered by Urban BBQ.  We thawed out over coffee and hot cider as we ate and talked...and ate and talked…

Afterwards, my parents, Julie, Carrie (who were staying with us), DP and I all took like 3 hour naps.  SO awesome.



The shirt

DP's amazingly talented brother created the new Team Drea shirt design with NO input from anyone.  He just designed it and showed us the finished product -- it was so perfect, it brought tears to my eyes.

Here's what the letters stand for:

T: "Be brave" is what I wrote on my arm before the 70.3.  The Cape Lookout lighthouse is near my family's beach cottage on Harkers Island, NC.

E: My decoy collection, running and triathlon medals, my french horn, books with a "179" peaking out.

A: Pool where I spent so many hours training.

M: Rowing shell and oars representing my time as a coxswain in college (for DP's boat…and yet, somehow we survived as a couple...), my little Nissan Frontier pickup, and my first car: a 1962 VW Karmann Ghia.

D: A spatially-acurate campus map of Davidson College where DP and I met.

R: Lizzie reigning supreme on her cat tower.

E: The Lucky Strike tower at the American Tobacco Campus in Durham, NC where we were married, our house, and the Washington Monument where the walk was (and we could see from our old Chinatown apartment).

A: Ha, my embarrassing shoebox filing system for all cards, photos, and other stuff I want to keep.  Organized by year though!

The front just says 179, which as you undoubtedly know by now, is my lucky number and Jon Blais's bib number at Kona.

So many people who weren't able to be at the walk have asked for shirts that I am trying to set it up as a mini-fundraiser on Booster.com.  Send me a message if you think you might want one so I can figure out the minimum to pre-order.

Why this Walk?

Of course, a big reason for this walk was continued fundraising for ALS.  Many people I know through ALS connections have kind of a love-hate perspective on the ALS Association.  This deserves its own blog post, which maybe I'll write some day, but suffice it for now to say that it is partly because ALSA devotes a majority of its resources to activities other than finding a cure.  As someone with ALS who is currently benefitting from their services, I am thankful for what the local DC/MD/VA chapter does and this walk is their main annual fundraiser.  We learned this week that in the recession, the chapter's reserve funds dropped to like $200,000 -- to put that in perspective, that is comparable to what it can cost to care for one ALS patient for one year.  
So thank you -- if you donated to ALSA, your money will go to help someone in this region, like me.  If you donated to the Blazeman Foundation, you know how much it means to me personally to contribute to the research to find a cure for this horrible disease so others never have to go through it.

Something that DP and I talked about as we drove home was that the walk took on a new meaning for him.  When we initially made plans to do the walk back in August, he envisioned the event as  a goal for us, a way to show the world that I was just as ready as ever to take on a physical challenge and have fun with it.

But by making it through the Ramblin' Rose triathlon, I proved what I set out to prove.   He said he realized that this event wasn't as much a message from me as it was a way for others to communicate their love and support -- which we soaked up sponge-style because we need it.   And for all of us to realize how far this disease reaches beyond the people afflicted with it.  Surrounded by that common camaraderie, the walk took on a spirit and meaning all its own.

It made me proud to be an American.  So much of our collective attention and energy is wasted on divisive politics, over-the-top consumerism, the Kardashians…this felt like the most natural form of patriotism on display at one of the most sacred spaces in our country.  Because Americans come together in times of need, support our friends, family and neighbors, and generously give of ourselves to help one another.  That is real America.





Tuesday, October 21, 2014

Ramblin' Rose Chapel Hill Race Report

A couple of people said they had trouble finding the link to donate so here it is:

We are over $10,000!!  Thank you everyone!!!!
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Backstory

Team Drea has picked up some new followers recently so here's a recap of my story:


179 has been my lucky number for almost 20 years, dating back to the good ol' days of middle school band.  It's like a friendly little omen I see everywhere…

I eventually set the french horn aside and for the past few years, running and triathlon has consumed my hobby time.  I did five triathlons in 2013, culminating in the inaugural Carolina Half in September, a 70.3-mile race in and around Davidson College, my alma mater.  

After the race, my hamstrings stayed wound tight and I was tripping over my toes.  That led to 11 months of tests, doctors, and medical confusion until I finally got a diagnosis of ALS (Lou Gehrig's disease) in August 2014.

ALS is a fast-moving degenerative disease where the brain loses the ability to communicate with the muscles.  Since the muscles aren’t being stimulated, they atrophy.  90% of patients with ALS die within 2-5 years.  In that time, their minds stay fully intact, forcing them to watch as they lose the ability to walk, talk, eat, swallow, and eventually, breathe.

So I was shocked when I learned of Jon Blais's story.  Jon “Blazeman” Blais became an Ironman in 2005, five months after being diagnosed with ALS at the age of 33 (my age).  NBC covered his unbelievable journey to Kona.  His bib number?  179.  

Jon created the Blazeman Foundation before he died two years later to declare war on ALS – to fund the research to defeat the disease once and for all – even though he knew it probably wouldn’t save him.  His parents now run the charity, not taking a salary so that 99% of the donations go to finding a cure.

Facing my own ALS diagnosis, I was incredibly inspired by Jon and thought I might be able to manage a super sprint triathlon before the season ended and use it as a fundraiser for the Blazeman Foundation.  My friends and family donated $9,000 in two weeks.  I was (am still) astounded.

Okay, you're up to date

Race Report

Ramblin' Rose is a women-only super sprint series in North Carolina.  Distances: 250-yard swim, 9-mile bike, 2-mile run.  

My oldest friend in the world, Julie, raced with me.   

Julie and I have been friends since age 2.  This is the kind of friend Julie is: She flew in from England to be in my wedding, she dropped everything to stay with me for a week this summer while DP was out of town (and left me little notes around the house that I'm STILL finding!).  She took swim lessons and bought a bike to do this race with me.  It was her first triathlon and I was excited for us to do it together.  But I had no idea how much I would need her...

Race morning was chilly – 43 degrees at the start.  I was nervous because I haven’t done much swimming recently because of a fall in July where I hurt my shoulder.  The nerves and the cold caused my muscles to clamp down, but I couldn’t do anything like running or jumping jacks to warm up.  So I just stood in the patches of sunlight and was grateful for the warmth.  I was relieved to get into the (warm!) UNC Wellness Center.  While waiting for our turn in the pool, I watched women of all ages, races, shapes, sizes, and swim abilities just doing their best with volunteers, race staff, and other competitors cheering them on.  It was really nice.  I relaxed.

The swim was fine (I wasn’t even last), but if I thought I was cold before, getting out and walking through transition sopping wet was a whole new level.  I clutched on to Julie and we wrestled my trike out, thanks to some volunteers (and my dad).  Swim: 12:42, T1: 13:07 (oops)

Seriously, we are smiling in EVERY pic!
I've said it before, but I love my Catrike Pocket recumbent trike so much.  The sun was out, the sky was perfectly blue, and for once, I couldn’t fall.  So I enjoyed every inch of those 9 miles – climbing the hills at an impressive 3.9 mph, screaming down them at 15 mph (which feels faster when you’re so close to the ground).  I thought about Jon Blais, all the people supporting me, and what a great feeling it was to use my muscles.  So much of what I love to do has been taken away from me this past year – to get a glimpse of it back even for a day was just plain awesome.

Some Luna Chix riders joined us for the last few miles.  They were so nice and chatty with Julie.  I didn’t say much because I was focusing on pushing myself and controlling my muscles. Bike: 1:17:23, T2: 7:03

I didn’t realize how far we were behind everyone when we started the “run.”  I had two trekking poles but my legs weren’t cooperating.  My toes curled, my feet dragged, and my knees locked out with every step.  Julie held onto my arm the whole time.  I really never thought about giving up, I was just frustrated by not being able to walk normally no matter how hard I concentrated.

The route was part greenway, part neighborhood sidewalk so several of Julie’s friends walked with us.  Some teenagers who had finished the race joined us, along with a couple of race volunteers (I later found out they thought we were lost).  So we had quite a little group approaching the finish. 


Never did it cross my mind that anyone would be waiting at the finish line for us besides our friends and family.  Julie and I were 40-some minutes behind the next-to-last competitor.  But the announcer had told everyone that they didn’t want to miss the last finishers and so somewhere around 100 people stayed.  Apparently, they had a dance party, which should be a mainstay of triathlons forever more :)

Walking through the finish chute with everyone clapping and cheering and crying, honestly, I couldn’t look around.  I would have lost it.  I mean, just watch the video...


Photo by Sarah Coppola for Tamara Lackey Photography
People say I inspired them, but it is nothing compared to what reverberated through me from all sides.  It was the very best of humanity.  What is it like to have that force of compassion directed at you?  It defies words.  Jon Blais knew.  And now I know too.  All I can say is thank you.  It is a memory and an emotion that my friends, family, and I will never, ever forget.

Not that it matters, but Run: 1:32:45 Total: 3:22:59.  (Lawdy, did I mention we took in NO nutrition?  Who needs nutrition for a sprint?  If you take 3 1/2 hours to finish, you do!) 

Thank yous

This is going to be longer than any awards show speech.  Team Drea is BIG, y'all!  I want to express my deepest thanks and heartfelt appreciation to:

The original Team Drea (minus Dr. P)
Our wonderful friends and family out there: DP, Dr. P (who drove down from Philly as a surprise), my parents, Julie's parents Isla & Tony and sister Jennifer, Will, Arden, Linda, Kim, Genevieve, Shravan, Jaimi, Stuart, Scott, and Owen.  The Swim Bike Mom Tri-Fecta ladies: Robin, Aimee, and Lindsay. And the anonymous people who picked up the check for our table after lunch!


The Endurance Team: All of the staff and volunteers, especially the race director, Amy, who did a great job running the race and still managed to help me so, so many times throughout the day.   Tamara Lackey, Sarah, and the rest of Tamara's team who took such beautiful photos that we will treasure always.

My friends and family who donated: I asked for support and you came through beyond my wildest expectations.  I decided to do this race for me, but I finished it for you.  I am so blessed to have each and every one of you in my life.  Real thank you notes coming your way...

Everyone racing in my honor: Gregg, Greta, my cousin Ted, so many Tri-Fecta ladies, Carrie McCoy (at KONA!!), and my hysterically-irreverent DCTri NTP mentor Tuan who will be crossing the finish line at IM Barcelona 2015 waving a 179 bib.

My hero: My amazingly beautiful friend, Julie.  In all the photos I've seen, there is not one that she isn't in the frame too -- holding me up, helping me, smiling, waving.  Julie is MY inspiration to be a better person and better friend.  

I hope everyone is lucky enough to find their Julie in life, but mine is truly one of a kind.  The fact we found each other in preschool?  Everything happens for a reason.  Everything.






So fitting that her mom brought the bags of confetti we made out of construction paper in middle school to throw during New Year's Eve sleepovers!





Where to go from here?

Well, we’re doing the Walk to Defeat ALS in DC on November 1st (join us!).  DP and I will be turkey trotting & turkey triking a 5k on Thanksgiving.  I’m also hoping to help my wonderful acupuncturist, Liana, put on an adaptive yoga workshop for people with disabilities.  I’d like to do something with DCTri, since many of my friends there have been so supportive – maybe use one day of the off-season cycle program as a Blazeman Cycle for ALS event??  

And I’d like to think I could do another triathlon – maybe the HITS open category tri (even shorter than Ramblin' Rose!) in Naples, FL in January or one of LifeTimeFitness’s Indoor Tris.  Not to try to recreate what happened at this race (it can’t be done) but just have something to train for.  And because I love triathlon so much.  But if not, I will happily ride my trike for as long as I possibly can.

Some inspiration

My PT gym always has a new quote on its whiteboard. Here was this week's:

"When we are no longer able to change a situation, we are challenged to change ourselves." ~Victor Frankl

I have tended to live life by powering through -- head down, just keep pushing.  Yeah, that probably did help in the tri, but really, since the diagnosis I've let my heart lead the journey.  The result has been empowering, humbling, and led to the most extraordinary opportunities I never even saw coming.

Thank you, friends.