often, use heating pads, take hot baths. Truth be told, there are a couple times when the pain is unbearable, and nothing helps to ease it. Some days, I can barely move. It really sucks when I’m on the ice and I can hardly skate around the rink.”
“You’re a skater, right?” Vara asked. “How do you handle being an athlete and having a rare illness at the same time?”
“It’s a huge misconception that disabled people can’t be athletes,” I said. “Does my illness get in the way of my skating? Yes. But I still push myself to be the best skater that I can be, on the days when I actually can. I don’t need to meet other people’s expectations, only my own. In the end, the only person I’m truly competing against is myself.”
She nodded, like that was a good answer. “Okay. This might be a tough one. Do you think your disease makes you a stronger person emotionally, and gives you more love for yourself?”
Her question made me pause. No one had ever asked me that before. I really had to think about it.
After a moment, I said, “Yes, I think so. I’ve had to deal with things most people never have to, at a very young age. There are parts about my disease that would devastate others, but to me, it’s just routine. I can handle tough times easier because I’ve already been through so much. When you’re diagnosed with a rare illness, all the small stuff ceases to matter. It really forces you to look at life from a different perspective. I’m not the best at loving myself, but I’m trying. I know I do what I can every day, and I’m learning to accept that’s good enough. Before, I struggled to find value in myself. Now I realize just how precious every moment is. Sometimes I forget that. But when I really stop and force myself to look at my life from the eyes of the gods, instead of the eyes of the world… it’s magical what I’ve achieved. I don’t plan on stopping anytime soon.”
“What’s the most difficult part about it?” Vara asked.
I took a breath. “The hardest part of my disease isn’t the disease itself. It’s how people treat me. Even if you’re close to me, if you love me, you can never truly understand what I’m going through. But being here and helping to accommodate my needs makes all the difference. I know that some people in society don’t think I have any worth. I think that just pushes me to find the value in myself.”
Ethan’s look was proud, and full of affection. It made me feel so loved.
Vara asked me a few more questions, mostly about my infusion and how it worked. She closed her notebook, then took a professional camera out of her bag. “Okay. If you want to do the photoshoot, I agree that we should take pictures of your infusion. It shows you’re not trying to hide anything. That means taking your shirt off, if you’re comfortable with that.”
I was wearing a lacy black bra underneath my shirt that functioned more like a cut-off top. It’s not like I needed Ethan’s permission, but I glanced at him anyway.
“I’m not stopping you,” he said. “Do what you feel is best.”
Well, that meant stripping down. I took off my shirt, then laid it aside, exposing the butterfly needles in my stomach, and the medical tubing. Vara pointed to a white screen that was set up on the other side of the classroom. I stood in front of it, feeling more exposed than I would be naked in the black bra, jeans, and tennis shoes.
Vara put a finger to her lips as she contemplated my look. “Can you take your infusion pump out of your bag? I want to see you pose with it. You know, strong and tall.”
This was a lot. I felt my courage waver as I took my pump out and tossed the bag to the side, but Vara nodded. “Yes, that’s just it. Act natural. I’m going to snap a couple of pictures.”
I felt pretty silly, at first. Ethan watched me as I stood with the pump, keeping it at my side as Vara took shot after shot. She posed me a few times, and I felt self-conscious about the needles that were obviously a focal point. What if people saw the pictures, and thought I was a freak?