{I'm back. Sorry for the hiatus. After a whirlwind of getting a new job, getting engaged, and now married, I am finally entering the world of normalcy where I have time to think and actually type out my thoughts. Bring a cup of coffee, or in my case, chai, and enjoy.}
So yesterday didn't go quite as I had planned. I'm stuck in the middle of a weekend I had reserved for recovering from sinus surgery, finding myself with all kind of free time, which I am gladly enjoying with my husband. The surgery was cancelled because concern over adequate room in my throat to pass the ventilation tube. All in all, it's a good thing, as they discovered I'm having a recurrence of subglottal stenosis (narrowing of my trachea), which they can fix on the next surgery. I'm very thankful they were cautious and did the right thing; just a little frustrated there's another bump in the process to healing.
When you have a chronic illness, it takes perseverance. You have to develop your own way of accepting the ups and downs, aches, pains, inconveniences, what-if-someone-thinks-I'm-weird, doctors visits that don't go well, and the ones that do. However we choose to deal with the chronic illness mentally, there's still an aspect of accepting what is the "normal" standard for your health. You learn that a little ache here, a little shortness of breath there is maybe just how life is going to be. It's your new normal. So when I began experiencing more shortness of breath in late February, right before my wedding, I figured it was just the "normal" that went along with my frequent sinus infections. It just became a part of my life. I was diagnosed with an autoimmune disease. My sinuses are shot. I will be short of breath to some degree for the rest of my life.
So as I was laying in recovery yesterday, working to listen to the anesthesiologist - (by the way, why do they do that? Don't they know you can't see and/or remember anything?) - as he discussed why my throat was so closed up he couldn't get the tubes in it, he said something I'll never forget. Somehow between the technical descriptions and pictures, I heard the phrase "Don't be a hero."
Don't be a hero.
Why would he say that? At some point yesterday afternoon, crawling through my post-anesthesia brain, I remembered that the shortness of breath I experienced in February was probably subglottal stenosis. Today, I mused that maybe I should've mentioned that, pushed my ENT to look down my throat, maybe I should've fought more. Maybe I just did't believe I'm worth fighting for.
When you suffer much, you get used to it. It's sometimes a sad truth, and after this weekend, I never want to get used to suffering again. I may have been diagnosed with an autoimmune disease, but I don't have to take it. I deserve to be healthy. I deserve to have a higher quality of life than being so short of breath it takes me a whole 5 seconds to fill my lungs in between sentences. There was a point, when I was first diagnosed at the age of 18, that I allowed my family, friends, and doctors to fight for me. That can't happen anymore. I need to fight for myself. I need to stop being a hero and living with the symptoms.
To quote a popular ad campaign, because I'm worth it. And so are you.
Tangentially, your reflection reminds me of the experience I had this semester teaching two young men who are legally blind. One struggled with both lecture and lab, and either didn't or couldn't arrive to class on time. About two thirds of the way through the semester, he changed his major, and then declared that since General Biology wasn't required for his major, he withdrew from the course.
ReplyDeleteThe other was more assertive. He arrived early to both lecture and lab, took a seat where he thought the action might be, and didn't let me off the hook. If I ever said, "As you can see ....," he immediately said, "No, I can't." It was a remarkably difficult habit for me to break. He used a thick, heavy and somewhat cumbersome magnifying glass to attempt to read hand-outs I had enlarged for him, but otherwise sat quietly and listened to lectures and explanations. His biggest concern, which clearly showed by his facial expression, was during our study of genetics. He worried that his children might have a vision disability like he has. Despite his significant disability, he was already planning for a marriage and family!
As you might expect during lab work, he used his fingers. Whether they lightly touched the slightly raised or etched marks on glassware for measurement, or when gloved and touching the organs and tissues of a dissected specimen, he almost forced his way through the lab, asking his classmates to describe what they saw that he couldn't touch. He used his cell phone to take photos through a microscope eyepiece and then enlarge the image so he could see general shapes and outlines.
During the semester, he proudly announced that he had just learned how to cut up, bread and fry a whole chicken. He added, "The ligaments kind of pop when you cut them, don't they? Sure tasted good, though!"
Yesterday he scored the highest grade on the final exam. Only five of his classmates scored better than he did for the entire course. They were all science majors. His major? "Undecided"
I can hardly wait for one of my students to complain about how hard the course/tests/lab/everything was. I have an answer ready for them, but am undecided when I should use it: "Dude/dudette. You were just out-worked by a blind guy. Think about it."