For the past few months, my family and I have been able to forget some of the horrible symptoms of my sister’s disease. Since the holidays, it’s been relatively quiet; her pain has been manageable, and she’s been happy; she hangs out with friends, her boyfriend, practices driving, and stays up late on the weekends. But a few days ago, we were reminded that chronic illness is just that: chronic.
It started when she couldn’t sleep for a few nights in a row. She missed a few days of school, became exhausted, and walked around like a zombie. Huge knots grew in her back and neck muscles, making it hard to turn her head. For a moment, we all feared we were going right back to where we had been, and that the past few happy months had been some cruel trick the disease was playing.
Miraculously, though, after her doctor switched up some of her medications, and after she got the rest she needed, she seemed better, recuperated. She joined me for a trip to the mall, and even had a dance party with me on the car ride home. Before her diagnosis, I took moments like these for granted. I can remember my brother and I complaining that she was too loud, and not being able to keep up with her high-energy personality. Now, though, every glimpse of her old self, no matter how small, gives us hope.
It’s hard to remember, during the times when she feels better, how sick her disease can actually make her. When we have to cancel plans because her joints are swollen, or because she can barely keep her eyes open, it is a hard reality check for the rest of us who have been enjoying “normal” Cassidy for a little while. On days like this, I can never decide what my best move is. Should I encourage her to push through it, and continue going on no matter how much energy it takes for her? Or, should I take a breather, take a step back, and simply lay down next to her as she tries to regain her strength?
The lesson I’ve learned here is to go at her pace. It’s okay to encourage her, but she is the only person who truly knows what her body is going through. She’s the only one who knows what she can handle. She’s the only one who knows what’s going to hurt in the morning. Admittedly, it can be hard for me to switch off my excitement for something; especially if it’s plans we’ve made that have to be changed, something that the two of us were excited to do together. But through all of this, there is no better feeling than the times that she is loud, energized, and overall happy. If it takes a few days a month of laying in bed doing nothing, it’s worth it.