Since shaking hands with Governor Jared Polis after watching him sign the bipartisan “Right to Try” bill, I’ve been in a state of shock… for lack of better words. I just haven’t been myself. 

When I went on a hike with Eric the day after my bill was signed into law, I didn’t touch my camera once. Hell, I was barely present that morning. Don’t get me wrong: I enjoyed the hike, and I enjoyed being in the presence of one of my closest friends and mentor. But damn… for much of that hike, my brain was just filled with what I can only describe as white noise. My thoughts were spinning a million miles an hour, but I cannot recall a single one I had. 

Well… that’s not entirely true. At one point in our adventure, Eric tripped and fell, which gave me an “oh shit!” moment. But it wasn’t a bad fall, and Eric was able to get back onto his feet on his own (though, I did grab onto his arm just in case he needed my help). Once I realized that he was okay, my mind filled right back up with that white noise. And it has been that way ever since. 

When I woke up Monday morning, I had no idea what the day had in store for me. The night before, I’d listed out a few “to-do’s” that included things like “organize and fold socks”, and “do laundry”. Y’know, very normal, boring things. But, then my mom asked me if I got “the email from the governor…”, and my plans for the day were entirely derailed. 

Now that it’s over, I still can’t believe what actually happened. I can’t believe that the governor requested me, by name, to be present while he signed the “Right to Try” bill into law. I don’t understand why I, of all people, was asked to stand right behind the governor as he signed a bipartisan bill that passed the House and Senate with unanimous support. 

Honestly, I don’t think I’ll ever know the answer to that question. 

Taking it further, I’ve spent my time since Monday relentlessly asking God, “Why me, Lord? Why me?”

So far, I’ve gotten no answer. At least, no answer that has satisfied me. 

Still, it’s an extremely important question to ask. After all, I’ve been through so damn much. Scientifically speaking, I shouldn’t be alive today. Not even the best doctors I know can explain to me how or why I’m still here. Yet, I am here, and I got here partly because I did some… unconventional… things to stay alive. So, that leads me to turn to the only One who can answer that question for me: God Himself. 

Again, however, He hasn’t given me any answers, except for one that I really don’t like. Why? Because it terrifies me beyond words. 

Since shaking hands with the governor, I’ve felt a tugging at my soul to use my voice to do more good things. If a half-assed letter scribbled on the back of a Shutterfly postcard can get a bill signed into law, what else can my words do? 

Except, that’s the last thing I ever want to do, again. I want nothing more than to live a quiet, low-key, normal life. In fact, I’ve always wanted that. But, that kind of life’s not exactly in the cards for me. As much as I wish I could deny it, I can’t deny the fact that I’ve lived an extraordinary life, simply because of the way I was born. People celebrate me and call me brave for simply living my life; simply doing what it takes to stay alive. 

I don’t like to get praise from random people for… well… simply living my life, because I just want to be a normal person and live a normal life, but I can’t deny that I’ve lived one hell of a life. Now that I’ve met with some of Colorado’s most powerful lawmakers, all because I wrote a brief synopsis about how I beat a stubborn Pseudomonas infection, I really can’t deny it. And, again, that absolutely terrifies me. 

So, what do I do about this fear as I face the reality that I will never be able to lead a normal, average life? 

Well… I turn to God and pray.