young to carry that weight solo. “Through the Encyclopedia, from reading it. It said how long boys with it live on average, and I just eventually figured it out.” His tone reflects one that is common in our household – strangely calm and conversational with the strangest thing being that we genuinely sound unaffected. “How did you react to it?” “Not well. You’ve heard me say this before. It was the only time when I ever felt upset by my condition and when I felt sorry for myself. My teachers at school noticed that I was distressed and called home to let Mom and Dad know. That was when they sat me down and talked to me about it.” “Is that when Dad used the Shawshank quote on you?” Ray sounds confused. “He never said that to me. He said it in the radio interview he gave about me, but he never said it to me back then.” “Sorry, my bad. Must’ve misheard the story. So, he never actually said that to you after you fully found out about your disease?” “No. Just in the interview.” “Okay. Glad we got that straight.” I awkwardly search for a follow-up question. “Would you say that it bothered you more than it does now?” “It bothers me more now since there’s a lot less that I can physically do now.” “Okay. I see. I get you.” He is surprisingly open with me, and I get the feeling that this is somewhere along the line of questioning that he hoped for from the beginning. He’s gone through all of the high-school-journey and graduating-early stuff, enough to last a lifetime. So, it’s about this time that I decide “to hell” with the high school topic. “Alright. This is the most important question of the entire interview, so be prepared,” I say. “Okay,” Rays says sarcastically. “What is your favorite book? And, why is it your favorite?” No one has read more books than this kid, and I know I have found something he will stumble over. Figuratively. “Finally! A question that I have to think hard about!” From there, I hear several consecutive “ums” and a few “let me thinks,” and I also
picture in my head the squinting face he makes when he has to think about something quickly and intently. “I’d have to say The Lord of the Rings Trilogy by J.R.R. Tolkien.” “Yes, Ray. I’ve heard of him, too.” He read the trilogy in less than two weeks when he was in third grade. Safe to say, no one else in his class was reading that at the same time. “Hey, I’m just saying.” I see him and his crazy hand gestures making the point even clearer to me from over three hours away in Clarkridge. “I know. I know. Don’t lose your shit on me. You’d think I had just handed you a pair of denim jeans to wear.” I gave him his cue to follow up on. My mental picture of Ray squints his eyes, smiles a smile full of crooked teeth, and hands me one of our private jokes. “Denim?” It’s funny the way the pattern of muscle degeneration works. It only gets worse with age – no classic wine theories here – and it leads to eventual death. I find comfort in knowing that there’s a bounty on all of us in the end. We all gotta pay up and die one day; it’s just that, in Ray’s case, he has more of a clear picture of when it’s going to happen than anyone else in our family does. I gotta check out one day, too, as will the kids who I will make sure never have to be sick or carry any type of illness that I am unfortunate enough to have in my genes, as well. So, there is no real point in worrying too much on it – not for me and certainly not for Ray. No time to waste when your life’s been cut in half. But, as Andy Dufresne of The Shawshank Redemption says, “Get busy living or get busy dying.” I’d say Ray would agree. Yes.
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