Living with ALS, “Right Here, Right Now”

Maria-and-Jules-Blog-Header
Image
Maria-and-Jules-Family

Maria and Jules decided it was time for a shift. A big shift. It was 2019, and they had a young son and jobs that kept them very busy. Too busy. So as Maria said, they decided to “jump off the hamster wheel” and try something new for both of them. As they took this leap of faith together, they started a podcast called “The Couple Shift” to document this new chapter.

That was the story they wanted to tell, but not the one they would end up telling. The start of that story would be familiar to those in the ALS community: even though he was just 34 years old, Jules started feeling strange weakness in his left shoulder, then his left arm. In March of 2020—just as the world was going into lockdown from the COVID pandemic—Jules and Maria heard the words they had been dreading, “this may be ALS.” The official diagnosis came in May of 2020.

It was not the story they wanted to tell, but one they decided was important nevertheless. “We got home (from the neurologist) and Jules looked at me and he said, ‘no matter what happens, I want to keep telling our story,’” Maria said. “And that for me was like the green light that opened up everything else.” Their podcast would continue, and it would grow and lead to so much more than they’d ever thought it could.

“We knew we were going to shift the content and it was interesting because even the name itself (The Couple Shift) was like everything was getting set up for that moment in time,” Maria said.

Maria-and-Jules
It became such a cathartic space for us to talk about everything and be vulnerable with each other. It was like therapy. It was beautiful and so we kept just telling the story week-by-week and sharing how it was impacting us as individuals, as parents, as a couple.”

The story they tell is so engaging because it is so relatable—a couple and a family navigating life and love. But they both stress that they are not trying to tell the story of ALS, just their story of ALS. “(I want to express) how unique this experience is for each individual person, my story may have similarities to other families going through this, but it's definitely not the same for everyone,” Jules said. “And it's important for people to understand that ALS is such a unique and specific disease.”

Image
Baseball-Game-Jules

For instance, Jules is passionate about baseball. One of his dreams had always been to teach his son how to play. In the summer of 2021, he was in the backyard playing T-ball with their son Skyler, and Maria took a video of them finding a way to have this moment in spite of ALS. She showed it to Jules and their mantra was born. “I showed it to him and he said ‘I want to post that (to social media)’ and I said ‘what do you want to write in the caption.’ He said something really short and sweet about continuing to live and experience the moment 'right here, right now,' and I said ‘that's so beautiful.’ That was the first time we recorded that as part of his mentality,” Maria shared.

For Maria and Jules, "Right Here, Right Now" means living in the moment. It means not dwelling on the future or the past. It means doing what you can do and focusing on the now. And for Jules, it ended up meaning stand-up comedy.

Image
Maria-and-Jules-Cheek-Kiss

Well, really more sitting-in-a-wheelchair comedy. “I had a friend that I used to work with who was a stand-up comic,” Maria said. “We went to see him on a date night and afterwards Jules was like, ‘you know what, I've always wanted to do that. I think I can do it.’ For him, comedy has been a source of laughter and therapy.” So Maria began looking for a way to make it happen. Jules worked with their stand-up comic friend, and they developed a set that doesn’t pull any punches about ALS, but more importantly is legitimately funny! Eventually, the idea evolved into a comedy show fundraiser, and Jules got to have his five-minute set shown to a grateful audience as part of the show.

I think it’s such a gift that Jules has where through all of the pain he can still see the absurdity of the situation.”
Image
Team-High-Octane

Maria and Jules would like to find a way to do more shows, but for them the challenge is finding time for everything they want to do and deciding how best they can make the biggest impact for the ALS community. Jules is serving as the Community Champion Ambassador for the Miami Walk to Defeat ALS® on May 18, and he and Maria continue to raise awareness about the disease on their podcast, social media, and through advocacy.

“The idea of giving a voice and expressing and vocalizing what we're going through makes it real. It allows people to connect with it. The more people understand what happens with ALS, the more we will get funding and attention,” Maria said. 

 

Jules-and-Son-Soccer
If I could bottle up that feeling of what really matters and give everybody a little bit they would be like, wow, this is incredible. So we want to be a voice where we go beyond the doom and gloom where we acknowledge the deep challenges, but we also celebrate the incredible strengths.”

Special thanks to Jules and Maria for allowing us to share their story with the ALS community. If you have a story you’d like to share, let us know HERE.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to our blog or follow us HERE.

SUBSCRIBE

We Want to Hear from You!
Your feedback is important to us. Please let us know what you think about our blog – take this short survey and provide your input and feedback.

Comments

Submitted by: quinn C. on Sun, 03/17/2024

very sad how this disease is i was diagnosed roughly 8 months ago and i dont think its actually hit me yet what a terrible disease this is but anyone with ALS do not give up never give up

Submitted by: Stephanie O. on Wed, 03/20/2024

We are sorry to hear what you are going through, Quinn. You are right - never give up! If you need any support, please go here: https://www.als.org/support.

Submitted by: Jerry B. on Thu, 03/21/2024

Hello all this was a great testimony. I was diagnosed October 2022.i have the wheel chairs now but life is still beautiful. I was a rig Capt for over 20 years I'm 48 years young.. But like Jules said never give up.. God got this for us

Join the conversation. Please comment below.

CAPTCHA
7 + 3 =
Solve this simple math problem and enter the result. E.g. for 1+3, enter 4.
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.