I watch Eleanor and dream of running. All I see is some figure poised at the ready.
I see visions of her sprinting as hard and as fast as one can. The only goal is more. Legs starting out crouched, muscles compressed as they wait to explode. There is that final moment when everything is calm. Quiet. Peaceful. Suddenly and violently, every muscle snaps in an organized fashion. One set of quadriceps extending, as the leg is brought forward into the air, then contracting, bringing its foot down to pavement, jettisoning my body forward even more. Every other muscle in the leg is working with one sole purpose: support that explosion. Toes and the ankle are constantly making minor adjustments to keep the body stable. Hamstrings and calves compress as an army of thigh muscles raise the leg in support of the quads’ next explosion. Each set of muscles working opposite to the body’s other side, together in perfect unison with the frame. Left leg. Right leg. Left leg.
The rest of my muscles work towards the same goal of balancing and guiding, keeping this mass in sync with the rhythmic propulsion these legs are generating. The heart, diaphragm, and intercostal muscles all work together in their chest, pulling in oxygen to push the limits of every muscle.
Finally, she stops, but it will still be some time before the muscles can rest easy. Her heart still beats rapidly to feed the body more needed blood. Balance, guidance, and sync are still very much a priority. Long after all the other muscles calm, quadriceps still twitch. They’ll continue to do so until the whole body is finally at ease or until she gives them what they really want, which is to run again.
But she won’t do that now, nor will I, as there is nothing more left in us. At least not today.
I read somewhere that you are a writer if you can tell your story; you’re a good writer if you can tell someone else’s; a great writer can make the reader feel a story that never existed before. There is also the time those three worlds come together. The reader can’t tell whose reality this is. Neither can the writer.
As I watch Eleanor, I know this dream isn’t an image of her. She is an amazing little girl, but she is also just six years old. That fire, that focus, isn’t there yet. There’s still too much in the world to see to waste time with such a fixation.
Nor is this story mine. I don’t remember what it feels like to run. I’ve seen pictures and videos of me, but those images remain foreign. As I’m barely able to stand up straight and walk, I can’t remember what those muscles felt like during that contraction and explosion. With the constant numbness, tingling, and spasms, imagining those muscles twitching in anticipation of another round is beyond me.
I can only dream… and wait… and pray.
This scene I’m visioning belongs to no one in particular. My dream is someday Ellie and I will make this ours together. She’ll get there. Her gross motor function continues to develop at an alarming pace. If we are going to run together like that again, all the work is on me.
The last time Eleanor and I raced was March 1, 2014. We were on a trip to Disneyland with family friends. After a long, fun day in the park, we paused for a moment to rest our legs and refill our bellies. Everyone was in fine spirits as we walked back to the park entrance. Though already weakened by the onslaught of secondary progressive MS, my legs felt surprisingly good that afternoon. As we continued to walk, giggling and laughing, Ellie surprised me by blurting out, “ONE, TWO, THREE, GO!” She took off and, purely on instinct, I ran after her. The race only lasted about 50 feet, or so, but I’m proud to say I smoked that kid. I probably beat her by at least two strides! Ellie doesn’t like to lose, especially to her Daddy on his lumbering legs. She broke down crying. All I could say was, “Hey! It’s okay. Daddy just felt strong for a bit. That’s a good thing. Besides, I did look pretty good out there, huh? Right, Brie? Pre-tt-y darn good!” Ellie smiled and all was right in the world again.
Since that day, Eleanor has developed faster and stronger. I have grown slower and weaker. My mind still holds out for that day we race again.
For both Eleanor and me, that’s our dream. I want to win. She wants to see me try.
The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!
Never Stop… Never Quit…®
* Inspiration: Van Halen, “Little Dreamer”, Warner Bros., 1978
For the full selection of Ellie's 2016 BikeMS mix, go to: https://open.spotify.com/user/22cq6yaewkxyysepfxm5pb7hy/playlist/0JxHvtzx2weHhcqVLagbOc