“I Think Garbage Men are Sexy!”

I struggled with how to approach writing about this message on the back on my shirt.  Not because of the message itself, which I find hilarious (and which earned me many a funny look and longer stares as I ran through my local park…twice in a row…during a concert in the park…to rack up the requisite mileage).

No, the message part was easy.  Anyone who has seen the movie, Men at Work, knows that what it says is true.  But I imagine a few folks were scratching their heads, wondering what that message meant.  ‘Is she trying to encourage her significant other to take out the trash?  Perhaps there’s a secret calendar we don’t know about?  Is it code for smell doesn’t matter?  Or maybe she’s missing her sense of smell?’  And I’m pretty sure I heard one of the kids I passed by whisper, ’Hey!  Didn’t she sub for us last year?’ 

I imagine that message stirred up some extra interest in the locals and some poor guys are getting a bit more attention lately as they make their rounds collecting garbage. 

No, the message wasn’t the struggle.  The struggle was the focus.  Much like looking intently up at the sky will cause those around you to do the same, I wish it was that easy directing attention to ALS.

You see, my friend, Glynis, ordered that message.  She lost her husband, Vince, in 2016 to familial ALS.  Vince was a “Garbage Man” who worked for Recology out in California.  In a sense, I was running in memory of Vince…but in honor of Glynis. 

Because of this duality, my thoughts often shifted from one to the other.  I know my words can never depict the brutal nature of this disease…for those who suffer with it…as well as those who care for them, day in and day out.  You are in it together…and for as long as you are…you are in it to win it. 

You may think it strange to approach this fight with any sort of ‘win’ mentality.  After all, as of right now, we are still fighting a losing battle.  But the ‘win’ comes from the battle, what you make of it, what you put into it, and what you do with every little bit you find yourself left with.  ALS Warriors are #badAss with a capital “A” and they are awe-inspiring.

Vince was diagnosed with ALS two days before he and Glynis were to be married in 2015.  He was only forty-eight.  He passed away thirteen months later. 

In the time that they had, they did their best to cram a lifetime of adventure into those thirteen months.  That’s a win.  Every day was filled with love, with the knowledge that life is short, and tomorrow is not promised.  That’s a win.  Each day spent together was a day lived to the fullest.  That is the ultimate win.

It seems like ALS produces two types of survivors. 

There are those who choose to break away and bury every memory of ALS deep down with every fiber of their being, wanting no reminders…no connection to anything even remotely, ALS.  They do what they have to do to survive…and that means cutting all ties.

And then there are those of us who go into beast mode with the sole purpose to burn ALS to the ground.  We welcome the challenges, the events, the walks, the rides, because it’s our way of shaking our metaphorical fist at ALS and saying, “You don’t get to win!”  We emerge from our first battle bent, but not broken.  Our hearts are bruised, but still beating.  Our hurt scars us deeply, but our healing…it is transcendent.  Each day we don’t give in is a win.  Each new day forward is another small victory.   

This latter group is where you will find Glynis.  She is my people, a part of my tribe.

After losing Vince to the beast, Glynis threw herself into spreading awareness and fighting for a cure.  This woman has done some CRAzy stuff!  She has participated in a K9 Gladiator event, a Spartan race, been a member of the Cheer Squad for the Tri-State Trek, started the #ALSCaraokechallenge, co-founded a 50 in 1 Day Bar Crawl, organized a virtual ALS Warrior Bingo during COVID-19, drove from California to Massachusetts in an epic road trip with her mom, and regularly dresses up in funny costumes (my favorite is still Trekasaurus!) to add her special brand of joie de vivre to whatever proceeding of which she is a part.  Wherever Glynis goes, she leaves a sprinkling of that special quality, like so much pixie dust, upon the hearts of everyone she so much as brushes past.

But survival comes at a price.  And it’s not one that we often show to the outside world.  Surviving ALS is exhausting.  The emotional, mental, and physical tolls on the bodies of ALS Warriors and caregivers is immense.  There are many dark days.  There are many times when it can all feel so futile.  It can be hard to keep fighting.  And once you lose your person, it can be harder still.  The loss of their presence, their touch, their special place by your side, whether they were the better half of your penguin, your wolf, your eagle, your gibbon, or your wise old barn owl (contrary to a popular belief, NOT your lobster)…missing them can be a little too much to handle at times.  Sometimes, the war on ALS feels never ending.

Not too long ago, I was talking to Glynis about Virtual Bingo.  I had commented about how much work it must take and hard that must be.  Her answer was thus.

“Hard is a funny word for me now.  ALS is hard.  A cure is hard…so [yeah], this is hard…a lot of work, but I feel like I am helping.”

I ran with Glynis’s message on the back of my t shirt the day before a twelve-mile run.  It had been a rocky week.  Nothing was feeling easy.  But as I set out on that long run, I kept thinking about what she said.  “ALS is hard.” 

ALS is hard.  I know that it is hard.  You’d think I wouldn’t need that reminder.  Yet, it’s crazy how easy it can be to forget that…to become complacent. So, every time I’m doing something that batters at my abilities…I hope I remember to flip that switch and think, ‘This is not hard…it’s just hard work.’ 

And for those of you who are out there still looking for that special someone, don’t forget to slow down and give your friendly, neighborhood waste collector a second look.  You never know, you just might find a sexy Garbage Man of your very own.

I was selected to represent ALS TDI at the TCS New York City Marathon 2020 on November 1st. Due to COVID-19, the marathon has been cancelled. I have made the decision to keep training and to run the marathon on my own, here in Maine. If you would like to support my efforts to help #EndALS, you can donate here, or if you’d like me to run with a custom message, you can donate here.

Love is risk. Risk of pain. Risk of heartbreak. Risk of security and stability and all that you’ve built up to protect yourself, suddenly being destroyed. But it’s a beautiful risk. It’s a worthy risk. It’s a complex and messy and filling and incredibly wonderful risk that we willingly take when we find someone whose heartbeat matches our own.

– Marisa Donnelly