There are some moments in life that define the irony of our existence. Moments that make you want to laugh and cry, but also ponder why things are the way they are. There are times when having scleroderma just reminds you that you are a very sick person, no matter how hard you try to forget.
February 1, 2019, I was attending my best friend’s wedding. I was so excited, I barely slept the night before. I went to get my makeup done around 11AM by my very talented friend, who also happens to have scleroderma. I wanted to look flawless for the occasion. I had the perfect dress and I was ready to celebrate the night away.
A few months prior, a painful ulcer opened up on the right side of my foot. The doctor did not want me wearing closed toe shoes, but he made an exception for this. So needless to say, that night I was dancing with a limp!
When it came time to eat dinner, I was nervous. Since my fingers are curled and my mouth is small, eating takes me a very long time. My esophagus also takes a really long time for food to travel down, which is very common for people with scleroderma. The dinner options were vegan lasagna, fish, or steak. I opted for the steak since I am allergic to fish and vegan food doesn't keep me full for long. When I eat in front of others a small panic begins to flurry in the pit of my stomach. I have a systematic way to eat, which entails sipping lots of room temperature water and taking deep breaths to allow time for the food to travel down. In my head, I feel like I look pathetic while eating, and an anxiety begins to build. Others around me shovel food into their mouths effortlessly, while I struggle to chew on large, leafy salad.
My friend next to me cut the steak into really small pieces, and the eating process commenced. The steak was very tender and the sweet potato and green beans complimented the dinner very well. I chewed slowly and did my routine so the steak wouldn’t get stuck in my throat. About 45 minutes later everyone was finished eating and got up to go dance. I sat at the table, alone, halfway done with my meal.
I ran out of water for the last few bites of food, and felt the steak stuck in the middle of my esophagus. I had vodka with club soda, in a wine glass, but that seemed to make it worse. I started to internally freak out. If the steak didn’t go down, I’d have to go to the bathroom to throw that piece up. Right in the middle of this struggle, the photographer walked by the table and asked to take my picture. Maybe I should’ve asked him to get me water, but I smiled brightly as he snapped the photo.
This is the bane of my existence: smiling on the outside when I’m crying on the inside. If I were to react or cry about everything that has happened to me, I’d be a very sad person. So I’ve developed this automatic bypass system of always pretending things are okay, even if they aren’t. That’s who my disease has molded me into, and that’s why people with scleroderma are badass.
A minute later, my friend came back to the table and poured some water for me. After slow sipping, the steak finally went down. As I am writing this, I think back to the moment, and wonder why I did not ask for help sooner. Everything happened quickly, and sometimes panic makes you freeze. There was a flurry of dancing and happiness surrounding me and in that moment I was so angry that I couldn't just enjoy it. It’s hard to explain unless you go through it.
Chronic illness doesn't recognize weddings, birthdays, or parties, and has no off switch. Despite my flawless appearance, my limitations still got in the way and I became crippled by my insecurities. It's in these moments I need to remember to take a breath, look around, and ask for help. When I looked around I realized, I really wasn't alone.