June 2023
by Steven and Sarah Stepien

Taking a quick dip in the ocean seems like a simple task. You just walk down to the water, walk in, and then walk out. When you have ALS, or another physical disability, it can take a village to make it happen.

Steven Stepien was diagnosed with ALS in in 2021. He was able to work with death doula and put together a list of what he wanted to do. Getting into the ocean made that list. His friends and family were not going to settle for just getting his feet wet. His wife Sarah led the charge on getting him floating off the coast in Malibu.

This is how she did it:

“We had challenges in figuring out a life jacket that would fit his needs, provide neck support, and protect his airway either from choking on his own spit or getting sea water in his face. He has lost the ability to move/control his legs, arms, torso, neck, swallow reflex and speak. To counter all of that we got a life jacket for those who are completely paralyzed – again it would be ideal to use in a pool or lake without waves – but with all of us there to lift him up between the waves it worked. 

We got a silicone neck brace that could get wet to support his head/neck on the bumpy beach and transfers. And we got a full-face snorkel mask to protect his airway and so he could still bite down on his paper towel to pull out any excess saliva. He actually just had his botox procedure to his glands five days prior and we gave him a really good suction before we went down, so he was fine during it all. 

At Paradise Cove, the staff provided us with beach wheelchairs to get him to and from the water and then we just had a couple strong guys lift him in and out while I managed his airway. There were also two lifeguards in the water with us, watching the waves and telling us when to go in, when to lift him out, and then when to put him back in. The undertow and current were really strong that day so it took all of us to keep him safe. The beach also had a Cafe, a private area that we rented with chaise lounges, tables and chairs, and various electrical outlets for us to keep all of our stuff, and plug in any equipment he might need.”

What was the most memorable part of the Adventure?

  • The pure joy and happiness on everyone’s faces, but mostly Steve’s, that we actually did it! We made his wish come true! 

What did this trip mean to you?

  • It meant not letting ‘no’ stop you, it meant not letting your abilities stop you, it meant everyone coming together to be there for one another, it meant one more time to feel the connection to the ocean and the water, and just for a moment feel free and normal again! 
Steve has late-stage ALS, and in April 2023 he went on Hospice. He created a video with the help of his Death Doula over 6-weeks of his final wishes. You can view it here.