Tuesday, July 2, 2013

Finding New Avenues of Joy

Yesterday morning I was watching Good Morning America and I saw a story that had "blog post" written all over it because it was extremely inspiring. I'm not easily moved to tears, so I didn't cry, but I did experience the face-flushing, heart-swelling sensation that causes me to feel warm and tingly all over. (I've noticed that experiencing that feeling is always the telltale sign that something is really touching me.) I know that people tell me I'm an inspiration to them, which I guess I am, but the man in this story is a true inspiration, so I felt compelled to write a blog post sharing his story. The world needs to hear more uplifting stories like this to help balance out all of the negative stories that we're bombarded with on a daily basis.
The story was about Steve Gleason, the former professional football player who was a safety for the New Orleans Saints for eight seasons. He is especially well known for his blocked punt in a 2006 game that became a symbol of recovery in New Orleans after it was ravaged by Hurricane Katrina. (This memorable sports move is now immortalized as a statue outside of the Superdome, and is entitled "Rebirth." The statue depicts Steve fully outstretched in a dive, his hands smothering the ball as it left Atlanta Falcons player Michael Koenen's foot.)
Here are two other cool tidbits I learned about Steve Gleeson as I was researching him for this blog post: he was also known for his long locks hanging out of his football helmet. He regularly donated his hair to "Locks for Love" which provides hair for wigs for children with cancer. After he retired from the Saints in 2008, Steve attended Tulane University where he earned a Masters Degree in Business Administration. I always find it impressive when sports figures, singers, movie stars or other celebrities value education enough to put forth the work to obtain a degree, even though they've found financial success another way. 
In January 2011, Steve was diagnosed with the devastating illness Amyotrophic Lateral Sclerosis; ALS or Lou Gehrig's disease. This is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. This is a terminal illness that steals your life a little bit at a time. It slowly causes your muscles to stop working, and will eventually leave you totally paralyzed, unable to speak and unable to breathe on your own.

I use the word "slowly" loosely since I realize it's a relative way to describe how this disease takes over your body. Although the paralysis is a gradual progression, I'm actually surprised at how quickly this disease debilitates a person. Steve was only diagnosed a few years ago, and the illness has already progressed to the point where he is wheelchair-bound, unable to speak and unable to eat more than a few bites of solid food (requiring him to obtain his nutrition through tube feedings). It's only a matter of time before Steve will no longer be able to breathe on his own and will require a ventilator (or something like the diaphragm pacer that breaths for me). The unfortunate truth is that Steve will most likely be dead in a few short years.

Even though Steve is suffering from a terrible, debilitating disease and the prognosis is grim, he still lives a very rich, full life and is an inspiring figure of positivity. He said that he's finding "new avenues of joy" and that with each loss he experiences, he's finding the "beautiful replacement" of something new. What a marvelous attitude and a true example of perseverance!

Steve has a dedicated wife, Michel Varisco, and she is his primary caregiver. I know from personal experience just how much of an undertaking this must be for her, since Steve and I are in similar physical conditions.  Caring for Steve will only become increasingly more difficult and labor-intensive as his illness progresses. I'm glad Steve has such a devoted, loving life.
In October 2011, Michel gave birth to their son, River. Steve is aware of the reality of his diagnosis and that it's basically a death sentence, as most people with ALS die within five years of their diagnosis. Steve is currently compiling a video journal library for his son. I'm a huge fan of documenting my life for future generations, so I'm so glad that Steve is recording his legacy and the essence of who he is as a person so that his son can know who him when he's older.  

I love these pictures of Steve and his son; they are so adorable and you can really see how much Steve loves River! I'm so glad that Steve and his wife were able to have a child because there's a good chance this will be their only one.
A few months ago Steve, his wife, son, some of his buddies and another man with ALS completed an epic adventure. They hiked all the way to the top of Machu Picchu in Peru. Steve's buddies carried, pushed and pulled his chair (and the other man's wheelchair) 2500 grueling feet all the way to the top. It was an arduous task that required months of planning and serious muscle power, but they made it. 11 hours and they made it to the top!

They got some wonderful pictures that I'm sure they will treasure forever. (I especially love the first pic showing River helping push his dad's chair to the top.) This picture is the epitome of priceless!
Today, Steve and his foundation Team Gleason are deeply committed to helping people with ALS live productive, inspired lives by providing access to life-affirming event and assistive technology until a cure is found.


abby4nikky said...

Thank you for posting this story - so amazing and inspirational!

abby4nikky said...

And I love the T-shirt "Finish Strong" - that is what I always tell my daughter on the golf course - no matter how you played that day...finish strong!

Heather (Paralyzed with JOY!) said...

I agree that that is the perfect T-shirt for Steve's friend and NFL teammates to be wearing for the adventure that they undertook. I bet it was exhilarating when they finally reached the top after the difficult 11 hour climb!

Post a Comment

I love getting feedback on my posts, so please leave me a comment!

If you have a question, feel free to email me at heather_i_johnson@yahoo.com so that I can respond to you directly.

Related Posts Plugin for WordPress, Blogger...