Chapter 8: Courage Under Fire
The enemy strikes first. Our hero is revealed.
I felt a sudden pressure building in my throat. I’d never felt this sensation before. Somethings wrong. I turned to Jamie and spoke, but no words came out. No air either.
A voice in my head, “Oh my God, am I choking?”
As I made the universal sign, hands clutched to my throat, Jamie, audibly, posed the same question.
I nodded swiftly and my wife leapt into action.
In an instant she was behind me, arms hugging my lower ribs, hands clasped ventrally against my upper abdomen.
My 19-month-old daughter continued to shove food into her mouth, unmoved by the display. It was a Broccoli Mac and Cheese night in the Smith household. And evidently, I let both my excitement and voracious appetite get the best of me.
Someone early on in my ALS journey, with much more experience than I, made it a point to educate me.
“Take small bites,” she implored.
Well, my confidence certainly failed me. At least, that’s what I’d like to believe. In reality, the more likely culprit was denial. Either way, I ignored the advice.
In between thrusts, my mind scattered every which way.
I recalled my CPR class. “Is she even doing this right?” It certainly wasn’t working fast enough for my liking.
I envisioned an ambulance pulling into our driveway. “How long would it take for help to get here?” I wondered.
But mostly I thought about Iris. “She can’t see me die today.”
And then finally… a cough! I began to make both progressively louder and more forceful sounds again, and before I knew it, I was at the kitchen sink spitting out my new least favorite vegetable.
I couldn’t turn to face my family. I heard Iris cry “Daddy!”
My first Radicava infusion. One of only two FDA approved ALS drugs, Radicava, historically, has underwhelmed most pALS. Gait disturbances being a signature side effect.
This is going to be harder than I thought.
The last few days since the choking incident have been hard on me. I’ve been progressing faster than I would like to admit. The disease has spread to my right arm now, joining the left. Today I couldn’t open a water bottle. My speech is labored and my legs don’t feel right. Jamie and I have a solid strategy in place but right now I feel like I’m losing.
Courage is an often misunderstood virtue. To many, it implies the lack of fear. But that couldn’t be further from the true definition. You can’t have courage if you don’t have fear. To be courageous is to confront that which frightens you. And the more frightened you are, the more courageous you will have to be should you choose to face it.
I thought twice to post this lesser positive writing, but if I’m going to do this honestly, you need to know the truth.
I’m really fucking scared right now.
BUT…
Today I started a new treatment. My wife and I have also received some positive news regarding both insurance issues we’d been having and a research trial that we desperately want into. In other words, there are finally some weapons at our disposal and we have yet to use them.
For me, this week marks the turning point in this war on ALS. I’m determined to make it so.
And now I wonder how many heroes felt courageous whilst they spoke of slaying the dragon before even stepping into the den? Before they heard its breath. Before they saw fire.
For me, there is no turning back. Even if I wanted, my escape is sealed. I MUST confront that which frightens me the most or lay down and die. As I’ve said before, it’s a false choice. Persons with ALS have no other option than to be courageous. Especially as we stare into the fire.