A cloudless expanse of blue stretches as far as I can see. Distant hills are covered in grasses of green and gold. Several trees cast long shadows across the dirt and stones at their base, and the shrill notes of songbirds in the branches punctuate the silence. Their song brings me back to the voice inside my head.
So much beauty and yet so much pain.
My body is covered in sweat, and though my hands feel weak, they are the least of my worries.
How much more can my body take? . . . Is this it? . . . Have I reached the end of what I can do?
With every step, my legs feel heavier. The pain in my calves throbs. I just want it to stop . . . please make it stop.
More time. I thought I had more time.
I was afraid this would happen, but I thought it wouldn’t catch up with me until the very end. Now, it’s all I can do to take ten steps before I’m forced to rest.
Just steady yourself and push through the pain.
The ache spreads to my thighs, and my calves begin to quiver before I can take eight more steps.
Rest . . . just a few minutes of rest.
I decide to keep moving, but after five more steps, the pain is almost unbearable and the weakness is spreading. I extend my right leg back to stretch my calf muscles. This offers a momentary reprieve from the pain. The slight relief I feel as I stretch my left leg tells me I can keep going, but after three more steps, I
find out how wrong I am. This is it—my legs won’t carry me any farther.
Why is this happening now?
I find a place to sit, but the pain continues. My jaw clenches as I fight back the urge to scream out my frustration. My hands curl into fists as anger wells up within me. Fully spent, I want to release the exhaustion, the frustration, and the pain.
My body is failing me. Even worse, I’m failing—my wife, my kids, my friends.
All my life, I’ve been in control. Now . . . I feel it slipping away.
— P a r t 1 —
ANSWERS AND QUESTIONS
— JUSTIN —
How many hours have I spent in the waiting room of a doctor’s office over the past thirteen years? I’ve lost count. During that time, I’ve endured an unending series of muscle biopsies, MRIs, blood tests, and various other forms of poking, probing, and prod- ding. And still no diagnosis I can depend on.
When I was in high school, my best friend, Patrick Gray, used to come with me to a lot of my appointments, but the distance between his home in Idaho and mine in Southern California makes that a little difficult now. Since moving to San Diego, I’ve often sat here alone, waiting for answers. Today, I’m grateful that my wife,
Kirstin, is able to be with me.
The door leading back to the exam rooms opens, and Jennifer, my doctor’s medical assistant, surveys the busy waiting room. We make eye contact, and even though she knows Kirstin and me well, she goes
through the formality of calling my name.
“Justin Skeesuck, come on back.”
By the time I get to my feet, with my leg braces and cane keeping me upright, Kirstin is already at the door. She knows I want to get there on my own, even if it takes me a while. As we continue down the hall, Kirstin and Jennifer slow their gait to allow me to keep up.
“I like your cane, Justin,” Jennifer says as we approach the exam room. “Is it new?”
I look down at the dark purple wood. “Yeah, my best friend made it for me.”
When the weakness spread from my left leg to my right, Patrick purchased a four-foot slab of purpleheart wood and spent hours in his garage with a jigsaw and hand sanding tools, fashioning a beautiful cane. It has become a cherished symbol of our lifelong friendship....