Thread by @bsw5020

If you are looking for a thread to reaffirm the good in life, this is for you (note: you may also cry, but it’s a good cry).

Punchlines first:

1. Seven years later I am 100% sure marrying @sabrevaya was the best decision I’ve ever made; and

2. @SteveGleason was right. /1

Seven years ago today I married @sabrevaya on the Aegean Sea surrounded by the most amazing family and friends. We danced by the water until 3 am, alive in every sense of the word. This is us that day. That perfect, amazing day. /2

The four years that followed were amazing. We built a life in Chicago. Landed our dream jobs and had two beautiful daughters. Sandra pushed me in every way to enjoy life, just see below. I could not have written a better mid-30s if I tried. /3

Then came the diagnosis: ALS. And the prognosis: 6 months left to live. What. The. Actual. Fuck.

We cried (a lot). Talked (a lot). Hoped (a lot). And then decided to fight to do what we were told was impossible: find a way to make me among the first generation to survive ALS. /4

The last three years have been a blur of activity. Flights every other week in search of breakthroughs. Trips with the family every chance we got.

I felt driven with a sense of purpose. I felt alive even though my body was dying, waging an epic fight against ALS. /5

As you can see below, I carry with me the scars of this fight, literally and emotionally. So does @sabrevaya. She has fought this fight step by step with me. Cared for me as ALS progressed and held our family together through unimaginable stress. /6

About a month ago I fell while walking up the stairs. The fall ripped open the scar left by the staples in the back of my head—which I had received courtesy of the fall above. As I sat bleeding, I saw the fear in her eyes. It scared me like nothing since diagnosis. /7

I posted about the fall and most praised my determination to keep fighting. I was grateful for the support. Then came @SteveGleason who, like only a brother in this fight can, called me foolhardy and reminded me that I can do much more alive than dead. /8

Steve’s words stuck in my head. I couldn’t shake them. I didn’t want to die.

So I reached out to @ClareDurrett from @TeamGleason who put me in touch with @blaircaseynola to talk about scooters. And as @TeamGleason does, they knew just who to hand me off to to get help. /9

I soon found myself on the phone with Renae at @pridemobility. She patiently walked me and @sabrevaya through the options available to us, the pros and cons of each, and answered our never ending questions. We settled on a scooter, thanked her and assumed that was it. /10

Fast forward to today. The scooter arrived this morning—hand delivered by Renae who had flown into town. I was dumbfounded when I saw her. She drove the scooter up to our house as I came outside, and I could not stop smiling at this amazing soul. /11

As I looked at the scooter I was struck by dueling emotions. On the one hand, it was an outward acknowledgement that my ALS was progressing. On the other, I was free again. Free to range from our house without fear of falling, to go on bike rides with our girls, to live. /12

As I drove the scooter around I could not stop smiling under my mask. I could feel @sabrevaya watching too, smiling a real smile for the first time in a long time. You see the fight against ALS is non-stop so these moments, they are everything. /13

After an hour, Renae left. As she did our 3 year old came running outside. She joined me and Sandra on a quick walk. As we got into the alley behind our house I challenged my 3 year old to a race—the first time in her life. She beat me👇

I am still smiling, 12 hours later, from that race and Renae’s kindness.

Oh, and @SteveGleason was right, I’ve got a lot left to do in this life. Starting with putting down this phone and telling @sabrevaya I love her.

Good night moon.

One addendum: I just found out that Renae DROVE hours to be here in person. I had assumed she flew given the distance, but no—she is even more epic and amazing than I thought. Here’s to great people in this world.