Saywatanayo (Shawshank Redemption)

To my friend Josh,

I’m sure heaven is a brighter place today, but our world feels pretty empty. We did not have time to say goodbye. Or time to tell you all of the things that come to mind today or how thankful we were to know you, to have you in our lives, to learn from you, to see you smile.

You had learned all of the lessons life had to teach. You shared your knowledge, spread your joy and extended your hand to all of us. You made our lives better. You made us better.

For the last two years, you participated in the expert panel during PPMD’s annual conference. In your blog, you wrote –“ the main theme of our talk was that life does not end with a wheelchair. We have all been able to accomplish much in our lives, despite being in chairs”. You were living proof that a wheelchair should not be considered an obstacle to success.

Later you blogged “I have no choice except to live to the best of my ability. After all, I could be around for a while and it would be a shame to waste even a second. To quote that noted philosopher, Ferris Bueller, "Life moves pretty fast. If you don't stop and look around once in a while, you could miss it." You inspired us to live today and everyday.

We leaned on you for your insight, for your courage, for your wisdom and for your humor. Just after Scott Sands’ received his pacemaker/defibrillator implant, you wrote “may your heartbeats be regular and your shocks be few”. Josh, you had first hand experience with this device, but your message hits home.

Like you Josh, I love the movie “The Shawshank Redemption”. In the film, Andy Dufresne and Ellis “Red” Redding were prisoners at Shawshank Prison. Andy and Red met while serving time for 1st degree murder. While in prison Andy believed his life would not end in Shawshank prison. He invited Red to be his business partner after serving his time. Red had little hope of freedom. Andy escaped from Shawshank. Sometime later, Red was granted parole.

You were working on your thesis at the time and wrote: “Even when I have the time, my energy often betrays me, thanks to my weak DMD heart and the medications I take to sustain it. After getting shocked 18 times by my internal defibrillator on one very scary night in July, I had to make sure that I did not allow myself to get too stressed out! So I tried to work at a slower pace, taking frequent breaks. It was highly frustrating, but I knew that (like Red, when he found the note Andy left for him) if you had come this far, you could go just a little bit further.

Andy’s letter:
Dear Red, If you are reading this, you have gotten out and if you had come this far, maybe you are willing to come just a little bit further. You remember the name of the town don’t you? (Saywatanayo)
I could use a good man to help me get my project on wheels. I’ll keep an eye out for you and the chessboard ready. Remember Red. Hope is a good thing, maybe the best things and no good thing ever dies. I will be hoping that this letter finds you and finds you well. Your friend, Andy

And on November 9, you added the finishing touches to your masters thesis and submitted it. You were tired and wrote “if only for a moment, I was able recapture some of my old magic, pushing myself every time I wanted to take a break. We'll see what happens, but it sure was nice to visit with my old self and to know he is still within me and I can channel him from time to time! Like Red, you were able to go just a bit further.

And now you are gone.

Josh, I like the words of Leonard Cohen. We are all
“passing through, passing through,
sometimes happy, sometimes blue.
(but very) Glad that we ran into you”

Josh, Hope IS a good thing and no good thing ever dies. If we could photograph HOPE, it would be your smiling face. I am hoping this note reaches you and finds you well. You are loved.

Your friend, Pat

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Comment by Dina on January 5, 2010 at 11:42am
I just came across your blog. I too had the honor to talk with Josh, via email. He answered all my questions about this disease and helped me see the positive. He will be missed!
Comment by Ivy Scherbarth on December 9, 2009 at 5:25pm
It was such an honor to listen to and to meet Josh at the conference. This may not seem terribly pc, but I was deeply impressed and filled with hope for my son because Josh was the same age as me. The world will remember with gratitude a wonderful man.
Comment by Mary Sahagun on December 8, 2009 at 5:43pm
Oh, so well written. Thanks for sharing that.
Comment by Patti Frank on December 8, 2009 at 11:59am
Rest in Peace Josh. We met two years ago at conference in Philly and I had a chat with your mom. You were lucky to have such great parents -- that makes a big difference. I try to do all I can for my son Kevin and hope I can do as well as your mom too! I am inspired by all you did. We will all continue to fight to End Duchenne. God Bless.
Comment by nbpendley on December 7, 2009 at 12:04pm
Amen
Comment by Jennifer Shumsky on December 6, 2009 at 9:23pm
Amen
Comment by cheryl cliff on December 6, 2009 at 8:34pm
Beautifully put Pat, rest in peace Josh. You are in good company this week.

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