When My Girlfriend Gave Me an Escape From the Pain of My Disease


I love my girlfriend because she takes my pain away.

I realize this statement might cause some eyes to roll. “Oh how cute, the disabled boy doesn’t feel pain when he’s in love.” But I can promise you my sentiment is based in hard-knock, death-is-real reality. I don’t intend to waste your time with gushy clichés.

Yesterday morning, I woke up with a lungful of phlegm. This happens more often the further my disease progresses. Sh*t seeps into my lungs while I sleep, and I wake up hacking like there’s an ocean in my chest. (Not actual sh*t. Mostly just spit. But spit in my lungs can turn to pneumonia in my lungs in the blink of an eye.)

Not a great start to the day. My mind involuntarily leapt to terrified chaos: you’re dying, you’re dying, you’re always getting worse, you’re dying.

But there was Anna, who held me while I coughed and spoke calmly as I lost control of my mind, promising everything would be OK.

We went out to her pool later that morning, sun blazing on the cement, and drank coffee under a patio umbrella. My ribs ached from coughing and 23 years of degradation. But we were laughing.

Then it was into the pool. There are very few people who I trust to lift me out of my wheelchair. That number shrinks even more when considering who I trust to lift me into a swimming pool. With monumentally sh*tty lungs and bones the size of popsicle sticks, I’m incredibly wary of being handled in water. The tiniest of mistakes could easily spiral into a Shane-being-dead situation, and I generally try to avoid that, so I choose my swim helpers with meticulous caution. Anna is one of few.

Shane Burcaw the mighty.3-001

For the rest of the day, I experienced the closest thing to perfection I’ve ever felt.

She plunged me beneath the surface, helped me swim in the clear, brisk water. Above, I rested my head in the cranny of her shoulder, our cheeks touching, whispering stupid jokes to each other as the sun crisped our skin.

We got out and lounged together on beach towels, drank crappy wine coolers and talked about the future.

And then suddenly, it was night, and I was in the shower, trying not to fall asleep as Anna helped me wash off the layers of sun grime, chlorine and suntan lotion. I was completely fried, my eyes burning from being open underwater all day. In this moment, I became aware of how happy I was, how happy I am.

Yes, my lungs still hurt. The phlegm is still down there. But for 12 hours it was not the most pressing matter on my mind. That escape was beautiful, and it was necessary, and that is why I love my girlfriend.

Follow this journey on Laughing at My Nightmare.

Learn more about Shane: He’s Teaching Others About Disability in the Funniest Way Possible.

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