I unexpectedly flew to New Jersey last week to be with my best friend, Denise and her husband. They received devastating news that their newborn son was diagnosed with a rare genetic disease, Spinal Muscular Atrophy Type 1. Doctors estimate 1-2 years of life at best. It doesn’t seem like the word best should be allowed in that sentence.
When Denise called to tell me, she was crying so hard I could hardly understand a word she said. When you hear a cry like that, it’s your body not your mind that processes the gravity in nanoseconds. It’s a numbness, a hollowness that spreads through your body like spider-cracking glass. I pressed the phone to my face wanting to hug her. I could feel the heart’s undoing.
They had just spent the fall and winter with me in Denver on a work stint. We bought ski passes together and looked forward to having an exceptional winter, despite the low snow fall. Friends together. Reunited. Ski bunnies in the snow.
When Denise’s pregnancy progressed, she hung out in the lodge and read while her husband and I skied. They headed back to their home in New Jersey in April to get ready for the delivery of their beautiful baby boy. (As you may remember from a previous post, her husband was the one who encouraged me down the double black diamond.) I hope his gentleness and fearlessness comes to serve them now in their moments of happiness and pain. During the allowing and the bracing. There is so much ahead that they are aware of but can’t see.
It reminded me of the time we drove to Winter Park. On our way up the mountain, we encountered 90+mph winds that created total white out conditions. It wasn’t a blizzard happening. It was intense wind blowing all the snow off the mountain. “The worst my sister’s ever seen,” said a man who shared a lift with me later. “She lives here.”
There was no turning around once we started up the mountain. Break lights that once appeared 30 feet ahead of us, like a helpful beacon, disappeared completely.
We couldn’t see the winding road anymore. The windshield wipers were nearly useless, except that their movement prevented a freezing shell, inching its way up, from forming.
It was a battle between the defrost and keeping the windows open so we could crane our necks out and guide ourselves on an invisible road. Three sets of eyes focused on different aspects of our movement. We drifted to the wrong side at least twice that we noticed.
This was a kind of panic that shuts the radio off and no one speaks unless necessary. My friend’s husband, who was driving, had remarkable calm. I kept thinking, that’s good. That’s really good right now.
A quick glimpse of a patch of rock or a metal post, were our only signs that we had veered too far, and always a second within not too late.
These extremes were slowly guiding us back toward the middle. It’s a place I want my friends to keep finding.
When you’re on a mountain escarpment, there is no pulling off to the side of the road. There isn’t one. There is no stopping, for fear of surprising the vehicle behind or worse not being able to start again.
There’s an unspoken force that makes you move forward, even when you’re blinded.
Wheels threatened our journey forward with their unpredictable spins in place and fish tailed us to and fro. I realized there are so many things that can go wrong. So many things you can’t control even if you try to will it.
It’s like that.
You can go for a fun day of skiing and find yourself inching your way out of lost. You can be a new parent and be handed the task of knitting joy with grief. One lasts a half hour, the other a lifetime.
I think of my parents. Young. 30s. Living the American dream. Working multiple jobs. Struggling to learn English and making a place for themselves and their family in a new world. They were full of hopes and moved toward all the good that they could imagine. All that was meant to be theirs. I know this because there are photo albums full of parties they went to. Balloons and cigarettes and drinks and toothy smiles. Care free days before their dreams got shaken loose, got changed from the ways they imagined them.
Dad suddenly had mysterious symptoms. Numbness, tingling, tripping over his own feet. Blindness. Can you imagine losing your sight for a few seconds not knowing if it will come back? For some, with MS, it doesn’t. My parents trucked on with tears and uncertainty as close companions as my Dad became paralyzed. What does it take to embrace that?
Finding joy in the everyday. Pushing onward in the face of pain. Appreciating the time you have.
I’ve learned something from them. While inevitable, it’s best not to focus too long on why the bad luck of being in a terrible storm, instead you have to ask yourself, how the hell do I make it through?
It’s what makes navigating a road both singular and collective. Even if no one is in your car, even if you can’t see people behind you and ahead of you, even if you think you’re the only one about to go off a mountain in the quiet slip of the snow, there are people sharing the same road.
There are invisible people pushing you forward.
Love is already forming a rescue.