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 :)