This is me last week and unless I tell you no one would guess I have NMO.
If you’ve read any of my previous snowboarding posts you’d know I have an ongoing love/hate relationship with the sport. It’s been 9 years of start/stop learning and I feel like I’m only marginally better (if I’m being honest I’m not that bad anymore but it feels like it). No one would fault me if I quit since neuromyelitis optica gives me a great excuse. Believe me, the thought has occurred many times but what I’ve had to come to terms with is that I’m not built to quit. In my mind it’s a ride or die scenario, which makes no sense to a lot of people. “Go to the spa instead”, “Go shopping”, and “Take it easy on yourself” – phrases that repeatedly make me feel like a loser.
What keeps bringing me back is the magic of the mountain. When I finally allow myself a break I pull over to the treeline, find gratitude and say a prayer. Sometimes I pray for myself but mostly for my daughter and that we can give her all the tools I didn’t get growing up. If she can be better than me, smarter than me, tougher than me, in every possible way I’ve done something right this lifetime. In these moments I am grateful for the opportunity to be called Mom. I am grateful for one more day that NMO hasn’t robbed from me.
But snowboarding with NMO is tough. This year by sheer willpower (and against doctor recommendation) I fought against horrible vertigo and diminished vision. Right before we left for our trip it was determined that I was battling a minor ON flare and without the right care it would likely lead to a major attack. And I know, this is where I hear the voices of all the NMO patients in my head telling me to take care. But if there’s anything this disease has taught me it’s that my willpower is much stronger. Yes, I felt winded a lot of times, I sat on the mountain and threw up breakfast and then later my lunch, and more than once my body just stopped responding. But letting this disease win wasn’t an option.
The hardest part is being alone. After 9 years (again, start/stopping) I’m still not strong enough to ride with everyone all day. I can go a decent speed when I’m warmed up but it just isn’t sustainable. Not when I need breaks, need to vomit regularly and need to freak out at myself and my God. My husband, family and friends will do a few runs with me as a warm up but I am always overwhelmed with such guilt when I hold them back and we all know it’s inevitable. To stay safe I must admit defeat to NMO because pushing myself too far has/will lead to injury. My abandonment issues always gets the best of me then. I isolate myself with music on the mountain and tell myself I prefer the solitude but after several days “wanting to be alone” I have a fight in my head with my God.
Me: Why me? Hasn’t my life already been tough enough? It isn’t fair I have NMO too. Why can’t I be healthy like everyone else on this freakin’ mountain.
Me: I hate this! I hate my body! Everyone bails out on me, even my body! Even my own immune system is quitting on me! Having faith in you is complete and total bullshit!
Me: (imagining God looking at me all smug) So it’s gonna be like that. Push me when I’m down.
And then I have to start the cycle of willpower and positive energy all over again, all whilst strapping the board on again and still with the limited vision and vertigo.
But I’ve said it before and I’ll say it again, getting to the bottom of a run is addictive. The sense of accomplishment over all these things makes the mundane Monday mornings of life seem easy. I feel super human that I got down a mountain just like regular folks. It’s how I imagine Superman must feel like when he’d really like to brag that he’s waaaay stronger. And like Superman only a few people know my secret, this ugly invisible disability that really gives me super mind strength.