Saturday, May 28, 2016

Race for Shy Tuna: Part 1

Last September, when I told my friends in Atlanta that I was coming to visit and meet up with a man from the internet named Shy Tuna at a Cracker Barrel off I-20, they were a little alarmed.

I tried to explain, "See, his name is Mickey, but he runs something called 'Shy Dye's Love Ministry' where he sends tie dye shirts to people with ALS, just to make them happy." That didn't really help.

But in the ALS community, Shy Tuna is famous. He has sent 450 shirts to people with ALS around the world. Why? Because he found that tie dye shirts make people smile...and, arguably, who needs a reason to smile more than someone with ALS?

It would be a noble endeavor for anyone, but Shy himself has ALS. He was diagnosed in 2011 at age 50.  Despite bulbar onset, he was still able to eat and feed himself (even smoke!) when I met him and his wife Debbie for our meal at Cracker Barrel. That's pretty miraculous. Although his hands have weakened, he walks without assistance. The most noticeable symptom is his gravelly voice.

Shy wrote a guest post on my friend Royce's blog so I encourage you to read his story in his own words. Also, here is a flipagram of people with ALS sporting their shy dye. It saddens me to see so many who are no longer with us, even though the video is just a year old.

The Shy & I

Shy's path crossed mine at a critical time. In February 2015, DP and I went off on our crazy adventure in Turks & Caicos. By that trip, the shock of my ALS diagnosis had worn off, the excitement of the Chapel Hill triathlon had faded, and I was finally ready to dive in and divine much as I could about my journey ahead. I wanted to learn what to expect and -- more importantly -- how people lived once they knew they were going to die soon and with the knowledge they would lose every single ability and function until they were locked inside themselves. How did they find the courage to face living through every single day?

I read several ALS memoirs that vacation and one of the things that struck me was how the authors were able to pivot to use their careers, skills, and passions in a new, ALS-focused way. Jenifer Estess, for example, used her experience and connections in the theatre world to launch Project ALS and hold several celebrity fundraising events on her foundation's way to raising $17 million for ALS.

The other takeaway was that ALS memoirs are sad. The books I read tracked the disease to its inevitable, depressing conclusion -- their loved ones writing the last chapter(s) when they could no longer type, recounting the grief of their passing in the epilogue as they struggle to go on and carry on the person's legacy.

I kept thinking about Shy Tuna's tie dye shirt that had arrived in the mail just before we left. How had he managed to rise above his own grief and fear to find a new purpose and happiness?

His deep faith is certainly a driving force. It is a ministry of love after all -- he prays for and with his ALS brothers and sisters as he sends the shirts and posts their pictures. He hates the disease, but he loves the people more. He loves spreading joy more. Heck, he even loves music festivals more. And so he doesn't waste time on sorrow or self-pity, or it seems, on his own ALS.

That is the type of story I wanted to be reading. Less about the sad (highly predictable) ending, but how the person chose to live before the disease took over. The lessons they learned about themselves and about life which gave them the strength to face the difficulties of ALS with peace and grace.

Staring out at the blue Caribbean as the waves rolled in, I thought, yeah, I could write a book about that.

Up Next

My Ramblin' Rose Race Report, finally! I bet you can guess how the lessons from Shy Tuna apply to triathlon for me...

Thursday, May 26, 2016

Swim. Trike. Handcycle.

There is just too much to say about Ramblin' Rose Raleigh so here's the first of my posts about it. The backstory about how I "re-became" a triathlete.

On the road again...

The reason Ramblin' Rose Chapel Hill 2014 took me (and, by extension, Julie) so long was because of the "run" which was really an aaaaaaagonizingly slow walk using trekking poles. I'd planned to use the walker in 2015 but (un)fortunately the triathlon turned into our spontaneously planned dri-athlon because of a pesky hurricane.

A week later, I had an aha moment -- or really a duh moment -- when DP and I spectated IM Louisville and we saw at least two athletes using handcycles and racing wheelchairs. Why hadn't I looked into an alternative for the run??

So a quick mini-primer. This is a handcycle -- three wheels, gearsThe rider propels himself by cranking his arms in a circle:

Photo credit:

A handcycle is different from a racing wheelchair, where the rider pushes the rims of the chair (no gears):

Photo credit:

In Ironman races and paratriathlons, a handcycle is for the bike portion and a racing wheelchair is used for the run. Thanks to work by Kyle Bryant and others, Ironman also recently created a "PC Open" category that allow trikes (like mine) instead of handcycles for the bike.

But handcycles have also made their way into marathons -- there's some controversy here (gears v. no gears) and now the New York and Boston Marathons have two separate divisions.


So after Louisville, the idea of a handcycle/wheelchair wheedled its way into my brain and wouldn't leave. Especially when the magnificent Coach Carrie McCoy of JustTri offered to give me a handcycle that her mom wasn't using anymore. Two of her awesome athletes (& Team Drea members), Kelly and David, drove through a snowstorm from Columbus to a random Cracker Barrel outside Pittsburgh to deliver it to DP and me.

Now that the move is done, it's warmer out (& finally stopped raining), and we're close to a bunch of flat trails, I started trying it out ahead of Ramblin' Rose Raleigh...holee molee!! It's hard. I like the challenge, but what I really like is that I can even attempt the challenge. What other people with ALS would give to have the arm strength to lift a fork or a child is never far from my mind. I'm not better than them, I'm not doing something special, it's just the luck of my progression and where I am on the journey with the disease. But I sure as hell won't waste the opportunity.

Before I got Carrie's handcycle, I'd applied for a grant for a new one from the Challenged Athletes Foundation. My rationale was I could get something customized to my size, needs and goals, but I figured it was a long shot anyway due to the nature of ALS and the fact that I am a beginner...BUT I GOT IT!!!!! Thank you CAF!!!!!

The new one is just like the top photo -- a Top End Force 3. It came a few days before Ramblin' Rose Raleigh so I didn't feel comfortable using it in the race, but I'm sooooo excited to start training on it!!

Try(i)ing again

When the Ramblin' Rose triathlon registration opened last December, I signed up for Raleigh. I was over being surprised when tri season rolls around and realizing I still could do it if I really stepped up my training. That is ALS running my life, not the other way around.

So with help from Ashley (and Starbucks) I've been swimming once a month since January at VIDA. Since moving to NC, I've been swimming 3-4 times a week at Lifetime with one of my parents, DP, or a friend swimming or water walking nearby, just in case I succumb to one of my self-psyching-out panic attacks. They still happen occasionally, and I still have to stop to rest sometimes, but I generally feel stronger now than I have in a LONG time.

The sure sign I love swimming? At the end of every single workout, I want to jump right back in and try again. I scan the pool and think this is really all mine, I can come back tomorrow if I want. In contrast to handcycling, where all I think is damn, this is a lot harder than running...

So when May came, I was feeling pretty confident. Which is of course when it all (almost) fell apart.

Next time, on Serial the blog...

But before I get to that, I want to introduce you to the man I dedicated my race to -- the one and only Shy Tuna!

Friday, May 13, 2016

Race for Lisa: Shamrock Yuengling Marathon Race Report

My goal this year is to do 12 races in honor of people with ALS who have inspired me. Originally the goal was 12 marathons but I’ve had trouble finding enough that will accept my trike. So now it’s 12 races – marathons, half marathons, triathlons, basically anything that will earn a medal that I can send to the person as a thank you.

In general, I want to highlight people who are still living because I want to show believe that there’s still life beyond an ALS diagnosis. It’s a death sentence, yes, but it includes a stay of execution. It’s what people do with that time that I'm intensely interested in, for obvious reasons.

But my journey wouldn’t be what it is today without the lessons I’ve learned from a couple of key people who have now passed away. Jon Blais, of course, and my friend Lisa McMillen. Today is Lisa (and her twin sister, Kat’s) birthday so it seemed like the right day to post the race report I wrote after my race dedicated to her – the Shamrock Yuengling Marathon in Virginia Beach.


I forget sometimes that Lisa and I only met twice and exchanged a handful of texts and emails before she died two days after her 32nd birthday. She feels like a close friend because I've had so many deep conversations in the past year with her at the center — mostly with her mom, Angela, and her twin sister, Kat. And also because I’m wearing her clothes. More on that later…

Lisa made her mother promise to take care of me after her death. Unbeknownst to me, they talked at length about how Angela would pass along the piles of gadgets and electronic equipment they had accumulated to make life easier and more comfortable for Lisa as she drifted towards total paralysis and became increasingly unable to speak or swallow. So I was more than a little taken aback when Angela called me on the day Lisa died to tell me that they wanted to give me an automatic door opener and a wheelchair-accessible van — but that’s Angela, Lisa, and Kat for you. They’d developed their own master plan and Lisa’s death just signaled it was time to execute the next phase.

Within a week, Angela and Kat had filled a closet in our basement with dozens of things I’d never even contemplated — a bracket to keep blankets slightly elevated in bed and not crowding your feet, for example. After Lisa’s memorial service (intricately planned with her input, right down to the lavender suit her mom was wearing), Angela and I began a Tuesday ritual of lunch and doing whatever I needed to keep ahead of ALS. One week we were refitting Lisa’s Gucci eyeglasses with my prescription (because at some point, I won’t be able to put in contacts), the next, I was sitting in a chair in the front yard, sketching the facade of our house as Angela called out measurements to see if Lisa’s platform lift could fit next to our front steps without invading the driveway.

Is that weird? I can hear you asking. Here this woman has just lost her daughter and now she’s descended upon me, taking charge of my care, as she did with Lisa. Was I some kind of replacement for Lisa?

No. We talked about this a lot actually, in the early days of our friendship. She had a lot of knowledge as she had been the primary caregiver for her daughter for almost two years. I needed help and a push to take on the frustrating/confusing/scary chores related to insurance, house renovations, ordering equipment, etc. while I still had time and ability.

But it was more than that. Angela shared stories about Lisa, how they’d become closer than ever during her illness, what she missed about her and what she loved. I could talk openly about my fears, sadness, and what I still wanted to accomplish. We were working through our grief in a way that felt productive, which suited both of us. When I could tell she and Kat were stalling about going through Lisa’s clothes, I suggested that the three of us do it together. What could have been an excruciating unearthing of memories was actually a fun afternoon — we all tried on Lisa’s shoes, coats, and dresses while they regaled me with stories of where she bought what, wore what, and which boots she insisted on wearing in her powerchair even though they took forever to put on. Lisa was omnipresent because Angela and Kat could quote what she said, word for word. Only when Lisa’s wedding dress came out did we fall silent. There was just nothing to say to make that okay.

Angela, me, Kat, looking fabulous :)
I thought I would feel weird about wearing a dead girl’s clothes, but it turns out that they bring me joy (and not just because Lisa has far better taste than me). It’s as if she’s with me, going on new adventures, living on in visual reminders to be brave and strong, like her.

The rest of Lisa’s hilarious, raucous Italian-Irish family has also embraced DP and me. I scarcely dare to eat in their presence because their nonstop joking is liable to make me snort wine out of my nose at any moment. This, in the wake of the devastating loss of their sister and daughter, has taught us how to grieve, make peace, and keep life going all at once.


So these were the thoughts I took with me to the Shamrock Yuengling Marathon in mid-March. My first 26.2-mile attempt since the City of Oaks in early November and I was eager to see what I could do. Also, I love this race. It’s the only marathon I ever ran (2012) so I often recall the memories in my mind's eye, but I was looking forward to wiping off the lens.

Horrible timing though. We only had three weekends between the offer and closing on our house and we’d been in Asheville cheering on some Team Drea members the weekend before. DP was stressed with work. I was stressed about managing the move.

Enter the cat mugs! My favorite pre-race dinner is hibachi (the cheesy kind where they cook in front of you, making onion volcanoes and bad jokes) and Virginia Beach did not disappoint. The ceramic cat mug for cocktails set me giggling, which turned into howls of laughter as we realized how much the place nickel-and-dimed its customers — e.g. if you want them to sing to you on your birthday, it's $7.95. Or when the waitress brought the check and told DP: “The chef only gets half the tip. So if you want to tip him 20%, you need to give 40%.” Um....?

We needed a night like that. The closeness of private jokes, reveling in the ridiculousness of it all. It reminded me of Lisa’s family. Even in their tears, you know that laughter is never far away. It’s not okay, but it is okay.

The weather, however, was no laughing matter. 2012 had been perfect — sunny with a refreshing breeze off the water. 2016 was heavy gray with rain squalls, 44 degrees with sustained 20mph winds and gusts up to 30. Really, Lisa? You couldn’t have dialed up a better forecast for me?

But nothing with ALS is easy, seemed to be the lesson — not even a pancake flat, scenic marathon with tons of crowd support. Wearing five layers (including Lisa’s fleece), I clenched my teeth against the biting wind and set out to do what I was grateful I still could.

The best surprise of 2012 had been running through Camp Pendleton for Miles 7-9. Soldiers from the Virginia National Guard lined the streets to cheer on the runners. I was blown away — they risk their lives for our freedom and they were cheering us on?

There were fewer soldiers this time, but I know it would have been Lisa’s favorite part of the course. She loved her job as a senior defense analyst with the GAO. She was deployed to Iraq and Afghanistan four times — I’ve seen photos of her smiling in fatigues, in Blackhawk helicopters, toasting with friends around the world. It was an important part of her self identity, which explains why she was still working until a few months before her death. This (recovering) workaholic appreciates her dedication, even if I was like wow, this chick is crazy! when she told me.

Around Mile 10, I turned onto the boardwalk and was greeted with a full-on headwind and blowing sand. It looked like the ocean was throwing its waves onto the shore. I closed my eyes, reset my gritted teeth, and focused on pedaling towards DP, who was waiting at Mile 13 to help me out of the trike for a much-needed bathroom break — another thankless job for ALS spouses and caregivers.

Sweet relief, a few sips of a diet Dr. Pepper, kisses from DP, and I felt like a new woman setting out for the second half. Around Mile 16, the houses ran out and the course veered off onto Shore Drive, a divided tree-lined highway so monotonous that the race had stuck signs in the ground with dippy jokes to keep the runners entertained. I munched through an entire pack of peanut butter crackers and wondered where my ALS came from.

Military veterans are twice as likely to be diagnosed with ALS as the general population. Endurance athletes are also more susceptible. No one knows why, but one theory connecting these two groups is the extreme pressure they put their bodies under.

Whenever I say this to someone, this is the stretch of road that flashes in my mind. I knew nothing of nutrition when I ran this marathon last time. I should have been consuming about 300 calories per hour — I’d probably consumed 300 calories total by this point in the race, notwithstanding all the months of underfueling I’d endured during training.

I know it’s more complicated. I know that even  if a physical exertion-related link exists, there’s still a major unknown X factor — obviously millions of people serve in the military and/or run marathons, do Ironmans, etc. without getting ALS. But it’s the only risk factor I can come up with for myself. So as I rode through the mostly deserted Fort Story, I turned inward and quietly, fervently praying for forgiveness. If I brought this on myself, I didn’t mean to. I didn’t know better. I just want another chance. Please forgive me. Help me forgive myself.

DP met me at Mile 23 with pretzels, just as he had in 2012. I knew he’d be there, but my heart quaked at the sight of him. So much has changed — everything really — except that. He’s still with me, running alongside all the way through the finish line, hand in hand, cheering me on. Just like Lisa's husband Sean did for her. So it’s not okay, but it is okay.

Time in 2016: 4:29:18
Time in 2012: 5:15:37

Happy birthday Kat & Lisa!!

Wednesday, May 4, 2016

ALS Awareness Month...sigh

It's May, ALS Awareness Month, and high time I re-launch my blog. I've just been having so much fun living (oh, and moving) that I've gotten out of the habit of writing on a regular basis.

Except I don't want to write about ALS awareness. It's exhausting and scary. A couple of people told me recently that ALS ruined their marriages, several more told me they would never stop grieving for their loved ones lost to this disease. I hate wading through words like apoptosis, necrosis, and macroautophagy (all of which mean "cell death"). I'm sick of the industry ALS supports, the politics of it all. Honestly, I'm even a little tired of ALS awareness posts.

From my little corner of the world, people seem pretty damn aware already -- either from their own experiences, or mine.

The sweet new shirts my friends Allison & Katie made!
Besides, when I think about my journey so far, what comes flooding to my mind are the people who I have met because of it. The deep friendships I never would have made (or re-made), the beautiful, unbelievably strong souls I never would have read about. The experiences I wouldn't have had. We certainly wouldn't have moved back to NC for me to spend more time with my parents or my friends here.

But I'm still a newbie in this space. I don't know what it's like (yet) to not be able to get up and move around when you want to, be fed through a hole in your stomach, be reliant on someone else for every single want or need. To know your own death is not somewhere nebulous in the future, but imminent.

I sure would rather spend my time and energy building sustainable cities, raising $ for bikes for kids with special needs, raising children with DP. But for whatever reason, God/the universe/fate/random chance ordained this to be my path and so I will fight alongside all of my fellow ALS warriors to bring attention and research dollars to this miserable, dignity-stealing disease until there is an effective treatment or cure. Something else because right now there's just a whole lot of nothing. Just a bunch of elaborate, expensive technology to keep you as comfortable as possible until you die.

There are a lot of important dates within May -- my friend Lisa's birthday, the anniversary of her death, Ramblin' Rose Raleigh triathlon which a bunch of Team Drea members (and I!) are doing, the 9th anniversary of Jon Blais's death, the two-year mark of my initial diagnosis. So check back often (at least weekly) and I promise not to be so quiet :)

And please, please donate to ALS research -- Team Drea has raised $108,794 for and the Blazeman Foundation!