My mom is retired now, but she used to be an elementary school librarian. I loved to visit her, especially in high school. I read to the kids and taught Spanish and sometimes phonics. Let's be real, though, I liked going there to take naps on the very comfortable bean bag chairs during lunch hour. I also have a fondness for peanut butter and jelly sandwiches with chocolate milk. Some parts of us never grow up.
When the four-year-old classes would come in, you would hear a certain phrase used often: "Use your words." These kids had just entered the world of words, and when you think of the different ways they could express themselves, sometimes pointing and whining seems completely reasonable. But pointing and whining isn't acceptable as an adult.
I have habits that have remained since first grade. It's as if my personality halted. My report card stated I was a bright kid who worked hard. It also said I talked too much, didn't focus well at times, and had problems telling time. It has all stayed the same! Here is the thing: When you have a chronic health condition, it is vital that you express yourself well, that you use your words. You might think, “Sami, you are a writer, your brain must be swimming with ways to express yourself.” I do love words. My favorite word yesterday: “cantankerous.” In no way does favoring the word cantankerous benefit me. Sometimes you need to speak up for your health. And I don't mean medically. I mean socially.
There was a clear-cut point when I knew I had a problem. It was last summer. I went to Chicago to visit someone I had been dating for a few months. I met him while I was celebrating my birthday in the city, and we kept in touch while he went to medical school and I went back home.
In Chicago, he met my parents, and then I spent a few days meeting his friends. Each day was rather busy, and we went all over the city seeing all of the sites. The heat was particularly brutal those few July days. I’m pretty sure it was near 100. With my health issues, I wear out rather quickly. However, I was with healthy 20-somethings who were by no means worn out. We had been on a bus to get to a Thai restaurant, but with the traffic, we were not making good time. He suggested we get off the bus to walk. By this point, it was all too much for me.
When I was 15, I developed a condition that affects your nerves called Guillain-Barré syndrome, which was brought on by a combination of Epstein-Barr virus and cytomegalovirus I had at the time. It paralyzed me temporarily, and I had to learn how to walk again. When I get tired, I have a barely noticeable residual slapping of my foot when I walk. I tend to trip a little easier when this happens. He heard the unmistakable sound of my foot slapping the ground. He looked back at me. I looked at him pleadingly. He recognized the sound, being a medical student fascinated with all things neurological in nature. I said nothing. I should’ve said, “Let’s get a cab.” I should’ve said something. We walked on.
What bothered me the most was the other people there, his friends, who I was trying to make a good first impression on. I felt that asking to take a cab was being difficult, and that was the last thing I wanted to be. They were also medical students, and I really didn’t want to be the medical freak on display.
Everything came to a boiling point that night, after much more walking around. When I peeled off my sandals, I had tremendous blisters on my feet. These blisters ended up rapidly turning into cellulitis. I had to go to the ER when I got home, and they gave me antibiotics. The situation between the two of us was not a pleasant one, either. He asked me straight out, “Were you going to speak, because quite frankly I have no clue what you wanted. You just looked at me like you were suffering. I can’t read your mind!” I was suffering. How did my eyes not say volumes? Here I thought I was a telepath, and now I had to cross that off my list of potential future careers. I was too uncomfortable and embarrassed to speak up for myself. At the same time, there was something equally wrong with him recognizing that I was not OK, and flat-out not caring. The combination of the two issues led to a relationship implosion.
After that, I started to speak up more for myself. What did I have to lose at this point? My friend wanted to set me up with his best friend in January. I don’t know why everyone wants to get me out and dating. The guy I was being set up with was a very nice person. When I first talked to him, he suggested we go skydiving. That’s not entirely Sami-friendly, but I feel like a lot of people wouldn’t be up for skydiving. I politely declined that suggestion. He then suggested ice skating. That is really not advisable for someone on anticoagulants. However, his two best friends have factor VII deficiency. I quickly texted my friend, “What do I do?” My friend replied, “Just tell him you’re like a hemo.” So I told him that I was a de facto hemo of sorts. He understood, and we made alternative plans from there. That was simple enough.
Another moment occurred at Washington Days when I was with the Wisconsin group. We were trying to figure out where we should eat. I had recently gotten out of the hospital and simply could not walk to the restaurant that everyone wanted to go to. I suggested a taxi, and I offered to pay. OK, so I really didn’t make that kind of progress. Instead, I pulled my two best friends aside to tell them I needed a cab, so they could then back up my suggestion to make things a little less awkward for me. Baby steps.
It’s unbelievably difficult when you have limitations of any kind—whether it is from medications or from actual health conditions. It’s weird to be singled out, to feel separated from the crowd. Nobody wants to be the pot stirrer. My advice is to be your own advocate in all situations, because you matter. I know I keep referring to dating, but for some reason people have become more extreme recently. You should read some of the online dating profiles I’ve read. People like to push limits. So next time you find yourself swimming with sharks on a date because you didn’t speak up when the opportunity presented itself, know that I feel for you. What happened to going to the aquarium? I liked the sharks better when they were behind glass.