A Surreal Day

You ever have one of those days, the kind that you ask yourself “am I dreaming?” How did I end up here, like “WTF”, no really! Someone please pinch me, well, because I can’t pinch myself.

Well, yesterday was one of those days…yeah that’s it.

Oh, you want to hear more! Ok, hold my beer, I’ll need my hands to talk.

The week had been working up to Sunday the 12th of March. Why, the Texas premiere of No Ordinary Campaign (NOC) at SXSW in Austin. The coordination began as soon as it was added to the film schedule; between I AM ALS, NOC and ALS community members.

Fast forward to the end of last week, the excitement is building as emails, texts and social media posts fly around. Meg and I arranged a meet-up at Terry Black’s BBQ. The invites went out and the time was se, or so we thought. Late in the week we were notified by a certain someone that a private event had been arranged, but to be discreet. In the end, many of the individuals meeting for BBQ were also attending the intimate event celebrating NOC.

Here is what transpired…

The event was sponsored by the Obama Foundation, supporters of NOC and also, due to Brian and Sandra having been staff members of President Obama. At this intimate gathering, Obama alumni and person’s affected by ALS mingled and connected. Two movements in one room, the possibilities for change and hope were palpable, to say the least.

Brian and Sandra, having recently befriended Rachel Platten, acclaimed singer song writer, surprised us with a private concert. Rachel has graciously offered her anthemic “ Fight Song “, to be featured in the film. We were graced by her, as she shared her music; treating us to songs yet to be released. A true gift for those of us present.

When finished, Sandra encouraged everyone to stay a little longer due to a surprise special guest. This elicited a flurry of murmuring as all present speculated who it could be.

Our curiosity was peaked, shortly after patiently waiting a brief moment, we were floored when former President Barack Obama marched in.

Before you ask, no photo ops were possible.

He spoke briefly, focusing on Brian and Sandra and the impact of their movement, and I Am ALS. He touched on the change I Am ALS has brought about in this world of ALS. More importantly, the HOPE that I Am ALS, through Brian and Sandra’s vision, has bestowed on those of us living with ALS.

This I the true message of No Ordinary Campaign, a love story disguised as a documentary. A surreal day capping off a surreal life, life with ALS.

Juan Reye

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