Life keeps me on my toes. At times, it feels like a perpetual game of dodge ball. It’s as if I’m swaying back and forth waiting for the next attack to strike. I’d like a metaphorical water break from it all.
I wish I knew how things were going to be. Future things. Not “When am I going to get married?” Not “What will my career path be?” Those things I can wait for. But I want to know how long my health will be stable. If I had to pick a superpower, maybe that would be it. If I could know what will happen, I could prepare for whatever it is.
I was one of those weird kids who sat with a course list for high school during middle school. I tried to plan my entire high school course load by 7th grade, and I did the same thing in high school while planning for college. It’s not that my plans didn’t change along the way. I just felt better knowing there was some sort of structure—an aspect of my life I could plan for. I was not happy when curve balls were thrown my way. I’ve made a lot of very stupid mistakes in trying to feel normal.
I was very committed to attending school dances. I love to dance and would often be the first one on and the last off the dance floor at every dance I attended. I attended the first dance of the year during my senior year of high school with a rather severe case of pleurisy.
I admit this was a horrific idea. Hours earlier I’d thought I was dying of a heart attack, and I had almost called 911. I’d ended up in the ER, and I was given a fair quantity of pain medication and antibiotics, yet I was too stubborn to miss my last fall high school dance. Another time, I went to a school dance just days after having surgery, and I ended up tearing my stitches.
And this wasn’t a teenage rebellion on my part, since it even stemmed back to my childhood. I once sprained my ankle during the dress rehearsal of a musical I was participating in. I took some ibuprofen, put a tight wrap around my foot for stability and proceeded, because the show must go on.
I’ve even gone on dates when I didn’t feel well. Even now, I still haven’t learned. My second date with 13 was the day after a pretty serious ER visit. I probably should have been in bed resting. It wasn’t the best decision on my part.
As time goes by, I make plans, those plans need to be altered, and I move forward. Sometimes, I find myself comparing my plans to other people’s plans. What are they doing in their lives? Am I at the same place? I’ve learned this is the quickest way to disappointment. No one’s path in life is the same, but the road for someone with a chronic illness is so very different.
I have to plan a simple night staying over at a friend’s house because I have to take medication multiple times a day. Nothing is impromptu for me. I also need to adapt so that I feel I have a semblance of security without having all of my life plans in place. Otherwise I make plans, my health interferes with my plan, and then I become upset. It becomes a futile cycle, in which I am just waiting for things to fall apart. It’s hard not to fear my health deteriorating.
I’ve gone out to clubs with friends a handful of times. And every time, I’ve ended up with a respiratory infection immediately afterwards, or I needed to stay in bed for about a week to make up for one night. Is it worth it? Sometimes.
So when I see pictures of acquaintances heading out for a night on the town, I have so many questions I want to ask. It’s as if they are from a foreign land. I wonder: How do you pick the perfect “going out” outfit? Is it expensive, and do you feel like you get enough sleep?
When I go out, I always feel like I’m wearing the wrong thing. No, I know I wear the wrong things. One time, I didn’t know I was going out to a club with friends, and I ended up wearing a cardigan. I also need to carry a massive purse with me to hold my medications—and it’s very difficult to dance with a big bag without hitting someone! I can often be found using hand sanitizer when I touch questionable surfaces. And because fog machines tend to affect my asthma, I often have to take breaks to use my inhaler.
From fall of last year until spring of this year, I had a lot of time to think about the lack of spontaneity in my life. I got monthly bouts of bronchitis last fall and ended up in the hospital with the flu, which weakened my immune system. Then I came down with mononucleosis, which led to hepatitis and myositis. Then—surprise!—I needed my gallbladder out, followed by deep tissue cellulitis, which I probably caught from time at the doctor’s office and/or hospital.
I’m so worn out. Then I think of all of the fun travel I have coming up, and I’m so excited, yet scared at the same time. I want to experience and be a part of things—different meetings, a childhood friend’s wedding, and another trip to my HTC at Duke (which I consider a semi-vacation because travelling through Asheville makes me very happy). I’m well acquainted with my body, though, and I know it tries its best, yet fails often. I feel like I put a lot of time into things only to not get the rewards.
This is why I’d love to know when those “breaks” where I’m stable will be. Will that one dinner out with friends set off a chain of bad events? Did my dad just sneeze three times randomly, or is he getting sick with something that will land me in the hospital by next week? I wish I knew these things, but I realize I have to be OK with the fact that life is unpredictable.
In the meantime, I’m apology-free about “Sami time.” My Friday and Saturday nights are often spent watching TV, sometimes going through multiple seasons of random TV shows on Netflix. I enjoy singing Adele karaoke all by myself using my microphone and amp system. This is safe for me. Of course, I spend time with friends and 13, but I need much more down time than the average person. I’m tired of trying to make my life sound more interesting to the healthy twentysomething crowd, who will never truly understand what I go through.
I can often be found reading a book—and I even dream about publishing one in the future. Sometimes I dream about flying off to some foreign country for a week or two and just existing in a space I’ve never explored before. Maybe it will never happen, but it’s important to me to keep those dreams alive—just in case I get that break.