I had to work for my miracle, sweat for it, white-knuckle it, but I didn’t mind; I never expected a miracle to be easy. No one promised me a rose garden.
I woke up from a nap today needing to use the bathroom, so I hit the button that pages my sister and planned how we would transfer me to the wheelchair. As she helped me get to the edge of my bed, I felt a rush of strength. Synapses sparked, lighting up my mind with the memory of walking. The path down the hallway ahead of me was clear and bright, and I saw what I could do.
“I want to walk to the bathroom,” I announced. I’ve had ALS two and a half years. At this point, abandoning my wheelchair to go for a stroll is almost as ludicrous as trying to fly.
“OK,” my sister replied without hesitation, pulling my walker in front of me. She got behind me on the bed, pushed me until I was standing, and placed her hands on my hips to steady me. “Whenever you’re ready.”
There will never be a better way to explain my sister than describing her actions in this moment.
I shuffled forward. My stiff ankles and knees, slowly remembering their job, loosened. In my mind’s eye, stringy, dry muscles were being marinated in blood pumped from my eager heart. With each step, the muscle tissue grew more swollen with life.
Over the course of ten minutes, I walked twenty feet. That’s ten minutes of a death grip on my walker, of clammy hands and a trembling jaw. Ten minutes of wonder and joy. I landed safely, marveling at what I accomplished.
“I’m not even out of breath,” I said, looking up at my sister. “It’s incredible.”
“I was worried about that,” she confessed, though she seemed so calm, I hadn’t even guessed. ALS affects everyone differently, but it always mounts a vicious assault on the lungs. That’s what kills us all in the end.
“I forgot to be scared,” I replied, enchanted by the sound of my own steady breathing. For those ten minutes, even my thoughts were freed from my disease. This was my very own little miracle, a butterfly dancing briefly on my open palm before fluttering away.
I once heard luck defined as the place where hard work meets an opportunity. After today, I would define a miracle as the place where hard work meets an extraordinary opportunity. This opportunity comes through a tear in reality to bear you forward on a divine wind. There are conditions, though. You must be ready and willing to see the tear in the fabric; that’s called hope. Understand that the wind has the strength of a hurricane (how else could it carry you?) and may batter you even as it saves you. Miracles thrive on perseverance and strong hearts.
I accept this. I am undaunted by exhaustion, bone-grinding effort, or crippling pain. I am not afraid because I have survived it all over the course of my disease and during the drug trial which, most likely, enabled me to walk today. From now on, if you come searching for me, check the crow’s nest. I’ll be perched there, on the lookout for miracles with my father’s binoculars and my mother’s optimism. I’ll be whispering, “Come. Fly over the horizon. Take your time if you must. I still believe in you.
To learn more about ALS, view the video below and visit my blog How I Live Now: Life With ALS