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No White Flags

Posted on 09 January 2017

Below are the words of Steve Gleason on January 5, 2017 on his 6 year anniversary of his ALS diagnosis. I was inspired to learn about Steve’s story this summer while viewing the “Gleason” movie, and have been a member of Team Gleason ever since. I hope you all find as much inspiration in his courage as I did. - MP

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"I am happy". Steve Gleason

Steve's message on the 6 year anniversary of his ALS diagnosis:

Today marks the six year anniversary of my ALS diagnosis, and I love my life. I feel purposeful and fulfilled with where I am. I’m excited about what is ahead. I know ALS is a remorseless and humiliating disease. It can leave its victims in a pathetic, silent, purposeless heap of flesh. It can annihilate families. Spouses become unrecognizable to each other, veiled in frustration, ange...r, and shame.

Six years ago I was fearful of what lay ahead. I found myself up all hours searching frantically for an answer. During my all hours searching, I found only one solution people were using to stay purposeful and productive - technology.

Five and a half years ago, Michel and I found out we would have a baby - Rivers. I started to record our life, my memories, my shortcomings, and my beliefs for our child. We also decided to help others in their search for solutions - Team Gleason. Our mission would be to allow people the chance to stay purposeful and productive, using innovative technology we help provide them. At some point, we thought our story, including the journals I had compiled for Rivers, could impact the public in a positive way. We chose to turn our life, the good and the bad, into a film - GLEASON. Not only did we believe a film could bring awareness to ALS, but we thought our situation, which we had filmed so honestly for our son Rivers, could benefit any person, who has experienced life’s adversity.

The film explicitly shows the struggles involved with ALS. Michel and I wanted this to be a raw and real portrayal of the struggle to live despite a terminal diagnosis. What the film only implies is the triumph. There were days in the past when I was so frustrated and hopeless, I felt death might be a welcome alternative to this life. Those hopeless days are behind me. I have been to the darkest places, and feeling this light, I don’t want to hide my joy. I’m active, influential, and present in our son Rivers life. I pick him up from school every day. I do lunch duty at school twice a month. I go to all of his practices, and help put him to sleep at night. Because of this life giving technology and an excellent care crew, in many ways I feel like we've conquered ALS. Additionally, Team Gleason, with the help of generous donors and other technology firms, is working hard to help provide the resources for others to be fellow conquerors.

While I intend to continue living a meaningful life for decades, I understand that my timeline is fragile, just like you. I don’t pray for a life without suffering, i pray for the strength to understand, while living triumphantly above the suffering.

Six years after being handed a terminal diagnosis, know this. By working meticulously and relentlessly, I have come to a place where I am happy.

 

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