Common Variable Immune Deficiency disorder. It was a rare disease that hardly anyone knew about. It basically meant that my immune system didn’t create enough antibodies for me to fight infections. I was one out of sixty-thousand— or more.
I could die. A bacteria or virus could come along, I could catch it, and that would be my end.
It was a terrifying reality that I didn’t want to deal with. Because I couldn’t handle it.
I swallowed the lump in my throat. “So what do we do now?”
“We start treatment,” the doctor said. “You’ll need to take infusions of human plasma to replace the missing antibodies, monthly or weekly, your choice. You have the option of intravenous or subcutaneous.”
Sub-what? “I don’t need infusions,” I argued. “I’m fine.”
Dr. Luticifo gave me a disapproving look. “I know you believe you can keep yourself healthy just by being stubborn, but that’s not the case. You’llneedthese infusions to survive, for the rest of your life.”
It seemed so dire. Dr. Luticifo rattled on and on about all the different options I had. His voice sounded like it was muddled and full of static. I was too trapped inside my own head to listen.
“That sounds good,” I said in a far-off tone. I wasn’t even sure of what I was agreeing to. All I could think of was that I had known all along I was sick. I’d felt it in my bones the first time Dr. Luticifo had suggested we do testing. I’d just been waiting to hear the confirmation.
Dr. Luticifo again repeated subcutaneous or intravenous. I chose subcutaneous… sub-q, I called it, because I hated long fucking words… because he said I could do it myself and didn’t have to bother with going to a stupid hospital. He set things up as I checked out at the front desk. I proceeded out into the parking lot of the hospital, feeling like a zombie and probably moving like one, too.
I got into my beater of a car and slammed the door shut. I looked at the papers they’d given me at the front desk before I angrily threw them to the floor. I slammed my hand against the steering wheel and got a headache for my trouble.
“This is bullshit,” I said. I was eighteen fucking years old. I was too young to have a chronic illness. It’d get in the way of my skating. It’d get in the way ofeverything.
But that was my life. Mom always said she had bad luck. I had the worst.
I started up my engine. Tears beaded at the corners of my eyes, but I wiped them away and told them to fuck off. I didn’t cry. I was tough.
I knew where I had to go. I left the hospital and floored my car in the direction of the ice rink. I ended up cutting someone off and they beeped their horn at me, but I flipped them off. Screw them. I was definitely having a worse day than they were.
I didn’t feel relief until I pulled into the parking lot of the ice arena. I grabbed my bag and headed into the rink, hoping I wouldn’t run into anyone I knew. I didn’t like people in general, and I liked talking less. I didn’t think I could handle making small talk after the news I got.
The ice was empty today. Thank God. No one was hanging around the rink in the middle of a weekday. I avoided making my way to the front desk, as I didn’t need to pay. I worked part-time at the rink in order to get ice time for free, whenever I wasn’t pulling long hours at my mom’s diner as a waitress.
Dr. Luticifo had told me that I’d have to quit working eventually. That I’d be too weak to hold down a job as time went on. I was better off on welfare— you know, for my health.
This thing was sounding more and more like a death sentence and less like a diagnosis.
If I couldn’t hold down a job, my hope of being a pro athlete was long gone, too. Not that it had been much of a possibility in the first place. But thinking about that only made me more depressed.
At least I hadn’t gone to college. That would’ve been a waste of money.
I pulled on my tights, a black practice skirt, and slipped on a fleece practice jacket before throwing my red hair up into a bun. I went onto the ice and a gust of cold wind hit my face.Freedom.No matter what happened, nothing could touch me here.
I warmed up by practicing all my spins before I moved onto jumps. I did all my doubles with ease, then practiced my triples. The triple toe loop, triple loop, and triple flip was easy. I messed up my triple-triple combination a few times and stepped out of my triple lutz before trying it again and landing it perfectly.
This was it. The big moment. I focused all my intention on my goal. I built up speed, then took a flying leap forward.
It was wild and undisciplined. I corrected myself and was able to get myself into the correct jumping position. I felt myself going around once, two times. I felt excited. I was going to do it this time!
Then the bad news from earlier broke into my head, and I faltered. I ended up landing on my ass in a very painful way as I lost control of the jump and went crashing back down to the ice.
Dammit. No matter how hard I’d practiced over the past few months, I still couldn’t land a triple axel. It was really frustrating. I tried again and again, but the result was always the same. I either popped it or fell.
This wasn’t getting me anywhere. I was here to try and feel better, not beat myself up over what I couldn’t do. I skated to the box, where a music player system was set up. It connected to the speakers that were over the ice. I put in a CD, pressed play, and skated out to my starting position on the ice.
My long program was set to the music of Swan Lake. I tried to put as much passion and emotion into my program as possible, though it felt like I was going through the motions. I did all my jumps and spins with ease, skipping over where the triple axel was supposed to be and doing a triple loop instead. As the program continued, I noticed my legs were shaking.
This is what I loved to do. I wasn’t going to let any shitty diagnosis take it from me. I slowed down and focused more on the choreography instead of the technical elements. I came to a halt at the end of my program, chest heaving.
