Friday, July 15, 2016

How are you doing?

I confess, whenever anyone says to me, "how are you doing?", my initial thought is like don't you read my blog? But then, I remind myself that a) my posts are ludicrously long, b) people are busy,  and c) I have been so focused with keeping up with my race reports that I haven't actually talked about how my health is, how we're doing in NC, and how we're wrestling with the basilisk monster that is ALS:

Photo cred: cinemablend.com
So this post is to remedy that oversight...

I am awesome. Every single day contains sparkling gems of why it was absolutely the right decision to move to NC.

Luke & me. Photo cred: mama Cathy :)
Take Tuesday: my dear friend Cathy and our godson Luke were visiting because they just moved back to Charlotte. We hung out in our apartment complex pool until it was time for them to leave and my dad (who rearranged his schedule) and I went to the van store for service. Then he took our recycling for us (b/c our brand new apartment complex is actually from the STONE AGE and doesn't recycle). I did a 2-hour call with ALS.net ambassadors, worked on this post while waiting for DP to get back from our fabulous, 10-minutes-away gym so we could eat the dinner he fixed before he left...in MD, he would have just been getting home from work on the Metro by then.

I sleep great. I swim 3x a week with my mom/dad or someone else. I have so many friends around that DP asked me (gently) "um, when do you think our social calendar will slow down a bit?" Oops.

So yes, it was the right decision to move, even though we miss our friends and family in the DMV.

I am weary. While I usually have the NPR app going at all times, I've had to turn it off this week. The world is just too horrifying right now. Yes, I know it's important to talk about race, terrorism, and what's causing the violence, but I just can't take the ongoing coverage or imagery of baby strollers crushed by trucks and the live streaming of people bleeding out. My heart just. can't. take. anymore. I'll tune in again (hopefully) when the violence dies down (hopefully) and thoughtful dialogue commences (hopefully).

[I remain up for any conversation involving beer, chocolate chip cookies, our complex pool, games that fling whipped cream, or FaceTime.]

I am fired up. I am trying to redirect my time and energy to things that I can (at least somewhat) control to make my corner of the world better. The Ales for ALS events have been great fun and given me tons of ideas for next year.

I hinted about coming excitement involving Team Drea -- DP and I actually have a bunch of projects in the works that we'll be rolling out over the next few months.

Here's one hint: You should plan to come to Raleigh to run or spectate City of Oaks on November 7-8. That'll be my 12th race of the year, the last one for the season, and we want to celebrate the journey with Team Drea (all of whom have been on their own journeys) and all friends & supporters who can make it.

City of Oaks 2015
I am progressing. This is usually what people mean when they ask "how are you doing?" My ALS is  still progressing bit by bit. My speech is a little harder to understand, voice a little weaker. I look to DP to tell long stories. My toes drag more. I feel twitching in places I didn't before (arms, fingers, stomach, lip) -- it's not constant and not painful, but it sure is depressing. My body is reminding me that time is running out, twitch by twitch. It sucks.

That said, my swimming technique is better than ever if you ignore the fact that I'm not really kicking. My arms are better, my breathing is mostly even, and I can swim for as long as I used to take to swim 1.2 miles (~42 minutes). But now, I'm only swimming ~600 yards. I so don't care, it feels amazing.

My breathing is somewhere between 93-98%, which I attribute to the swimming and thankfully slow progression. This is the best news of all.

My quads and calves are still strong thanks to the trike (and continuing to walk with the walker, however slow). I was happy that I could power through the gravel at the 17.76k. My handcycling is on hold as I wait for new, smaller hand pedals so I can shift more easily. It's too damn hot to handcycle anyway ;)

^^I just realized I started with ALS symptoms and morphed into triathlon "symptoms" -- I love this so much I'm leaving it.

I am grateful. For my life.

Happy Friday!

Monday, July 11, 2016

Race for Matt Bellina: Part 2

Photo cred: Competitive Imaging
Independence Day Classic 17.76k (get it?) Race Report

The race honoring Matt Bellina was part of our trip to DC for the Fourth of July long weekend. 

The race was on Saturday but on Friday, Hardywood Park Craft Brewery in Richmond, VA held their second annual Ales for ALS event featuring Andrea's Ale -- so of course we had to attend...besides, all the best races begin with beer, right?

Ales for ALS is a very cool fundraiser: Loftus Ranches & Hopunion grow & donate hops to breweries that then develop their own craft beer and donate $1/pint to ALS.net for research. For example, here's Hardywood's description of Andrea's Ale: "Fresh mango brings a refreshing tropical character to this session pale ale." Which sounds like a perfect description of me -- especially when you add DP's favorite part that it's only 3.7% alcohol...befitting for the lightweight I am ;) 

We've come to really love these fundraisers -- it gives us a chance to hang out with friends living in the area and we always meet new people living with ALS or loved ones touched by the disease. Thank you Elise, Shannon, Katie, Jo, Lo, Michelle, Anne, and Brea for making this event special and a HUGE thank you to Eric, Patrick, and the Hardywood crew for raising $3,000 for ALS research!!!

Photo cred: Katie Nicholson
Race Day

The 7am start time meant we were up at 5am, since we were a half an hour away and still had to do packet pickup. The 17.76k (11mi) race was held at Shirley Plantation, a 700-acre farm sprawling along the north bank of the James River boasting to be America's oldest family-owned business (est. 1613). Entering the property, we passed fields of corn and soybeans, then rows of grapevines and a winery.

It was all pastoral and lovely, steeped in history, but I was fixated on all the ROCKS. Everywhere. The race director warned me that most of the race was on hard-packed gravel and I'd seen a caution that runners should be on the lookout for rocks. Yep, rocks all over. No PRs today. At least it was flat...

I hadn't been given any special instructions on where to start so I seeded myself in Corral B for runners slower than 8:30. I hugged the right side of the gravel road to stay out of the way, but quickly discovered that the soft sand on the shoulder was far more problematic than the rocks. The trike wheels sank in and my quads started working hard. Too hard to keep up for 11 miles. Umm, can I do this? I felt the momentum of the race passing me and pretty soon I was back amongst the race walkers. 

Just when I was really starting to worry, we reached pavement. Whew. I switched to the left side of the road and began passing people. If I was going to need a bunch of extra time to deal with rocks, gravel, and sand, I figured I'd better gain some ground (ugh, pun) while I could. Fortunately, the race pack had stretched out by then and it was easy to skirt around runners.

I pedaled up next to a small contingent of military servicemen carrying a large American flag and a small sound system playing marching cadences. I gave them a huge smile and a thumbs up, then wondered sadly for the millionth time why ALS isn't more of a priority for military spending, considering veterans are twice as likely to be diagnosed as the general population. 

Jay Smith wrote a shocking column in the HuffPo last November about everything he’s learned from Matt Bellina, my honoree for this race. You should read the whole article to understand the outrageous way we are caring for the veterans who have protected our freedom, but here is the most jaw-dropping fact Matt told Senator Lisa Murkowski (R-AK, a great ALS advocate):

"I honestly think nobody has looked at the costs. The Muscular Dystrophy Association (MDA) estimates the total for all federal programs for ALS care is costing taxpayers $350-$450 million per year. You compare that to the $7.5 million spent on annual research and it really makes you wonder who is calling the shots and why they are still employed."

That’s right: at $450M, we as taxpayers are spending ONE percent of the money we spend caring for veterans with ALS on the research needed to end the disease forever.

I said a silent prayer that these servicemen with the flag will never know the ironic tragedy that is ALS, and pulled ahead. The course turned left onto the Virginia Capital Trail – a new (completed in 2015), 52-mile trail connecting Richmond and Jamestown. I’d never even heard of it but wow, it’s beautiful.

I spent the next few miles with the same group of runners, coasting past them on the downhills only for them to catch me on the uphills as I slowed to practically a standstill, dialing back to my granny gear and hoping I had enough strength to reach the top without asking them for a push. We kept saying to each other things like, “you got this!" "you’re awesome!" and "keep at it!” I love race angels – people who just come into your life for only a few critical minutes when you bond over encouragement you both desperately need, and then you part ways forever, never even knowing their names. But when you remember and talk about the race, they always reappear.

Photo cred: Competitive Imaging
That’s another reason racing means so much to me. People who haven’t been there don’t get it. Like the guy in the recumbent trike forum who said I should “just ride my trike around the block” when I asked for suggestions of trike-friendly races. “Why would you even want to do that? You’re not a runner anymore."

Eff that guy. He’ll never understand. But the people who manage these races should understand. That’s why I’m not giving up on my quest to make it easier for disabled athletes to participate. I haven't said much after my rant on FB, but I haven’t given up on it. It’s not the life and death kind of advocacy that Matt Bellina is engaged with in Right to Try, but it’s about leaving the landscape better for future generations...with a healthy dose of selfishness about improving and lengthening the time we have left. Hey, it’s the only life we get and we don’t have time to waste.

The paved part of the race was an out and back, but the pavement ran out for good in Mile 7. Along with the shade. While the morning started out cool and foggy, that had long since burned off and July was in full force. I got a quick kiss from DP around 7.5 when the course reached the point closest to the start/finish area before shooting out for a long loop along a gravel farm road for the remaining 3+ miles. He told me later that a bunch of people just dropped out there and started walking towards the burgers and hot dogs because it was just that hot. 

A short time later, I had some trouble climbing a little hill. It wasn’t very steep, but I didn’t have any momentum on the gravel. The tires skidded and the back fishtailed as I fought my way up this dinky hill as sweaty runners chugged past. All in all, it seemed like a pretty fair race for running v. trike.

Photo cred: Bellina family
As I slugged my way through those last few miles, dodging the ever-present rocks, I turned inward to say an ardent prayer for Matt Bellina and his family. I prayed for Matt to keep his strength and determination as alive as the day he woke up and decided that “this thing wouldn’t beat me.” That conviction comes from his steadfast promise to be there for his sons, JP and Kip, as long as he can. He does what he does for them, but since that means taking on the behemoth of Congress and the FDA, then that’s what he’s going to do. As he told me, “I have learned that I am much more than my arms and legs, or even the air in my lungs.”

That’s what we’re counting on. Thank you for your service to our country, Matt – in the past and the present. I hope that the government willing to send you to war is honorable enough to allow you the option to try to save your own life.

Time: 1:59:15 (avg. 10:49/mi)
Photo cred: Competitive Imaging

Friday, July 1, 2016

Race for Matt Bellina: Part 1

This post is part of my 2016 quest to do 12 races to honor people with ALS who have been inspirational to me. This is Race #5.


"It's like a slap in the face
Especially since he's a veteran
Okay, you wanted him to strap a rocket to his back
And fly around defending the country...
But now, when something's wrong with him
You're like 'sorry, it's too dangerous for you to try that.'"
--Caitlin Bellina, Matt's wife

Here's the thing with ALS. You get it, it's terminal in 2-5 years, and then you discover all the other injustices that exist because people are too busy dying to make a fuss about them. And so they continue.

Matt Bellina was diagnosed with ALS in 2014 at the age of 30. He had been a naval aviator based at the Naval Air Station on Whidbey Island in the Puget Sound when he could no longer ignore the twitching and loss of coordination. After he was grounded, he continued to serve in an administrative capacity until he was medically retired with a rank of Lieutenant Commander. Matt, Caitlin and their two young children then relocated to Pennsylvania to be closer to family.

As you learn in the VICE documentary on HBO, Matt's symptoms date back longer (as early as 2006) which excluded him from clinical trials. That doesn't stop him from seeking anything remotely promising to prolong the time he has with his family.

"I've got a basement full of crap I've tried," I've heard him joke on conference calls.

But recently, Matt got serious and became one of the prime movers in the current Right to Try movement on Capitol Hill.

Now before we get into politics, let's establish some baseline facts: 
  • People with a terminal illness, by definition, will die soon anyway. It's not just ALS -- some cancers, Parkinson's, Alzheimers, Duchenne's, SMA, etc.
  • It takes somewhere between 7-15 years to get a drug through the FDA approval process.
So if we are going to die anyway, why not give us access to experimental drugs that are already in clinical trials? Or are already approved in other countries? We're going to die anyway, so let us take the risk. At least give us the choice. Given the certainty of death on one hand and the chance of living on the other, wouldn't you want the choice? What if it was your child?
  • This argument makes so much sense that 32 states have passed Right to Try legislation -- mostly by unanimous vote.

    Okay, now the politics (deep sigh)...except that I don't really get the politics here. The senators and congressmen that have signed onto S 2912 / HR 3012 are mostly Republican. I can see that -- less government oversight/bureaucracy, more individual freedoms.

    What I'm not seeing is the opposition on the Democratic side. There's just radio silence as far as I can tell. The governor of California vetoed his state's Right to Try legislation because he said that the FDA's "expanded access" (aka "compassionate use") program was sufficient to give patients access to unapproved drugs for serious illnesses. Upon patient complaints that the process took months (which for a terminal patient is much of the time they have left), the FDA "streamlined" the process and Gov. Brown wanted to wait for the streamlining to work (while more people die).

    Now, I'm about as liberal as they come. I get self-righteous with the best of them when it comes to being pro-choice and how I don't want the government telling me what to do with my body...hey...wait a second...

    Deep sigh. Seriously, if someone finds a great argument against this legislation, send it to me and I'll be happy to discuss it here. All I can find is this Boston Globe article about how that's not the whole picture.

    What you can do: if you are so moved to contact your congressional representative, here is a handy guide to who to email or call, along with talking points for what to say. Next week (7/5-7/8) is critical in the legislative calendar.

    Up Next

    Race #5 is tomorrow, the Independence Day Classic 17.76k (get it?) in Charles City, VA. 17.76k = 11 miles, btw. I am doing this race in honor of Matt Bellina, Frank Mongiello, their children and families, and everyone else who is fighting for the freedom to try to save their own lives.


    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.

    Pivot

    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!

    I GOT A TATTOO.

    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.
    BECAUSE IT'S ALL JUST TEMPORARY.
    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.