Augie's Quest: The Good Days Outnumber the Bad

Jul 14, 2020

We’ve had the privilege of witnessing Ellen’s love of life as she and Lief attended our Bash event and danced the night away. Her perspective is one we all need right now.

“Hey kid, the good days will always outnumber the bad,” he said to me with a kind smile and wink. We were sitting side by side in the infusion center at Massachusetts General Hospital receiving therapy back in early 2002. Bill and I were on the same treatment rotation and had become friends. He had been front and center during the Cuban missile crisis in the Navy. I was currently on active duty as a Navy Nurse in CT. He was receiving the treatment appropriate for his neuro muscular condition. I was receiving it on the slim chance it would help, since one of my lab values was unusual when all other evidence pointed directly to the inescapable ALS. I was 26 years old, scared about the future, sitting next to my fellow veteran, and found his words were of great comfort to me.

Eighteen years later, I find that the good days have always outnumbered the bad and I suspect it will continue to be this way. The bad days have included the shattered dream of having children of my own as my siblings and friends continued “normal life.” The bad days also included the end of a young marriage in a bitter divorce. But, as you know, ALS is relentless in breaking bodies and hearts.

Today, we all find ourselves in unprecedented, turbulent times. This can be very unnerving, especially, when combined with ALS. My partner and I went into strict isolation in mid-March and spent three months together 24/7 as he was my only caregiver. We struggled through the social isolation, my guilt about depending completely on him and figured out how to settle into a new type of lifestyle. Our days now have a simpler rhythm. Watching flowers blossom is a big treat! The garage is not for my van anymore. It is set up for socializing with neighbors and family at a safe distance complete with a screen tent, carpet, lawn chairs and flower pots to line the entrance!

We Need Your Help!

Augie’s Quest to Cure ALS has been built on the engagement of volunteers and supporters. We need your help now, more than ever, to further our mission to fund the best science to discover cures and treatments for ALS. Join our Volunteer Task Force by filling out a quick survey. It’s easy and tailored to fit your time and availability. Thank you.

CLICK HERE FOR SURVEY

Join Us For Our Virtual Race for Augie's Quest!

We need you in our Quest to End ALS!

You have 1 week to run or walk 3.1 (5k) miles. Run them how you would like over several runs or all at once.

July 27 - August 2nd, 2020

Fundraise for Augie's Quest through Facebook Fundraiser:

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