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Channing’s Story

A letter from CURE Champion, Channing, to her Rookie self, originally published on HorseRookie.com, re-posted with permission

Dear Rookie Self,

You are five and in love with horses. Remember that first pony ride and the spark you felt inside of you?

Riding, hugging, grazing, grooming, bathing, picking, mucking… it doesn’t matter.

As long as you’re around horses, you’re happy.

Now, you are seven and competing–and everything is different. Remember that first horse show and the miserable car ride to get there? All the tears and the nerves?

Black and white photo of Channing hooked up to an EEG.Now, you are nine. Instead of heading to a horse show, you’re in the hospital, lying in a bed instead of sitting in your saddle, with electrodes on your head instead of a helmet, with a padded plastic rail at your side instead of an arena fence.

Remember when the doctor came in, flanked by a group of medical students?

“This girl has juvenile myoclonic epilepsy,” he says, as if you aren’t even in the room. “It’s a lifelong condition.”

“Excuse me, hello,” you say, and the doctor turns around slowly. “Can I still ride my horse?”

“Ride a horse?” the doctor parrots back to me as his lips seem to move in slow motion. “My dear, you may want to consider stamp collecting.”

Recovery in bed, dehydration, dizziness, nausea, seizure, headache, days of recovery in bed, dehydration, dizziness, nausea, dry-heaves, days of recovery, seizures, days of recovery stuck in bed, stuck in bed, stuck in bed, stuck in bed.Your seizures are followed by fatigue, then debilitating headaches that last for days. The doctors request that you keep a calendar of these events, and so you do. Remember how it read?

You decide to fight. You fight to get back in the saddle, and it takes all the strength you have.

Sometimes you make it to a lesson once a week, some weeks more, some weeks not at all.

But when you do ride, everything’s different.

Every second with your horse matters because you don’t know when that time will come again. 

Now, you are 24 and competing in the 2017 Dressage Region 2 Championships. It’s a four-day show, and only the final day (Sunday) provides the opportunity to qualify for finals.

On Thursday, you text your trainer to scratch. You’re in bed with a bucket, dehydrated, and suffering the side effects of 15 daily medications.

On Friday, you’re recovering a bit, but still stuck in bed.

On Saturday, you move from the bed to the couch. It’s progress. Your stomach – for days pulled tight like a double-knotted shoelace – is finally starting to relax.

On Sunday, the last and only day left to qualify, your body is so weak that you can’t imagine sitting up tall, shoulders back, heels down.

“Do you really care?” you ask yourself. Yes, you do.
Hold on tight to what you love, and never let go of the reins. Don’t let epilepsy win.

You push through the fatigue, the nausea, the headache, and the hunger after days of not eating… and you ride.

And it feels great, even though you place last in a class of 40. It’s okay, though, because riding is no longer about winning. It’s about staying in the fight.

Sometimes it will be hard to hold on tight to riding, during those times when the side effects of your medications keep you dry heaving for days on end, when the headaches reach the point of debilitation. Or, when you haven’t been on your horse Perla for days because you’ve been in bed recovering. Your medic alert bracelet won’t stop staring you straight in the eyes, as if it has a mind all its own.Your team is behind you.
But you will hold on tight to riding because the moment you stop is the moment you allow epilepsy to win the fight and take the world you love most away from you.

Fight on #epilepsywarrior,

Channing

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