Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Face in The Fire


Sparkler

“You are not required to set yourself on fire to keep other people warm.”

- Unknown Literally

It was another one of my colossal #heatfail, I didn’t know I had Raynaud‘ s moments and also involved me unintentionally burning, frying, and roasting my skin in a desperate attempt to get warm. However, this time it lasted only for a night and the effects were immediately evident.

It was my senior year of high school and the tradition was all of the seniors had a “ditch day”. I assume that over time the teachers realized this designated day was happening and they couldn’t do anything to stop it. Every senior had to participate, not being involved and going to school would have been socially unthinkable, even for a “rule follower” like me. The teachers knew it was going to happen and there wasn’t a punishment for missing. How could you punish the whole senior class that was about to graduate? The tradition involved all the seniors getting together on campus to pull off our “senior prank”, set up the night before “ditch day” after school was over. Then we would all drive cars and trucks up to a camp site in the mountains for our “senior camp out”, part of the tradition. It could be seen as an attempt to bond and enjoy one hast “hurrah” with the whole class together before everyone went on summer break and then off to college. Really though it was more of an excuse for everyone to get drunk, party, and celebrate. The next day none of the seniors would go to class on “ditch day”. Everyone was too hung over anyway. Sounds like a teenage dream right? Sure if you actually drink. By the end of spring my senior year I was the ONLY senior who didn’t drink at all. My class was small, a little less than one hundred kids, so maybe that factored into me being the only sober member. Some waited until into senior year to drink. A few weren’t big into drinking. But I was the only one not drinking on this trip and I’m pretty sure the only one who wasn’t some degree of fall down drunk by the end of the night.

I always felt different growing up for some reason and not drinking was just one thing that set me apart from other kids I knew who were my age. The summer before seventh grade was the first time I was really exposed to alcohol at all and to my classmates drinking. I remember being horrified. I felt like we seemed so young and I didn’t like what I saw them do and how I saw them act when they drank. I never wanted to wake up the next day after drinking and not remember what I did. So I made a vow to myself at that party that I would never drink or try any kind of drugs. And I’ve stuck to it ever since. Even though I’m a people pleaser, I’m also stubborn, an often internally conflicting dynamic. But in this case the stubborn won out. I didn’t come to this resolution because of religious reasons or my parents ever talking to me about not drinking. It was just what I felt was right for me in my soul. I wish I would have stuck more closely to what felt right to me in other areas of my life, but I did with not drinking or doing drugs. Even though these choice weren’t for me I never judged or held anything against anyone who drank. Only if their actions hurt other people and in those cases it was their actions that upset me and fact that drinking might have played in role in what they did or said that bothered me, not the drinking itself.

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That night at the campsite on the senior trip plenty of my friends were trying to talk and entice me into drinking. “Just try this!” They said, “Just take a sip!” I held firm, but I was miserable. Not because I wasn’t drinking, but because even in late spring in Colorado, and especially in the mountains, it can still get fairly cold. I was wearing some warm clothes, but with hindsight’s insight and not knowing about my Raynaud’s, I was NOWHERE near prepared. I think the night became either one long Raynaud’s attack or a series of several attacks or both while I was watching my classmates run around the campsite. I was so desperate to get warm that the big bonfire we made was the biggest draw for me. I probably could have sat in my truck with the heat on but I didn’t think it was that serious at the time and I didn’t want to waste battery or gas. I was just cold and trying to avoid drinks being thrust at me. So I moved next to the fire trying to warm up my numb hands, face, and ears. Despite the strong smoky smell invading my nose and saturating my clothes that fire felt like my salvation that night. My friends who had ridden up with me and I finally tried to sleep in my truck under blankets we brought in the early morning. I was so cold and I didn’t sleep at all. I remember lying there awake while my drunk friends snored, rubbing my hands and feet together praying for the sun to just come up so I could go home. After what felt like an eternity the sun finally started to peek out and I sat up, crawled into the driver’s side, and drove us all back with most of my friends still asleep. After I dropped them off at school I went straight home and stood in the shower until I finally felt some glorious warmth return to my limbs. I survived.

When I glanced in the mirror after I got out of the shower though I did a “double take” to re look at my face. It looked beet red like I had a bad sunburn. “What in the world?!?! I haven’t even been out in the sun!!” I thought, feeling alarmed. It took me a minute (possibly because my brain was still slightly frozen) to realize that I stood so close to the fire long enough for it to completely burn my face. Lovely. I had to go the traditional senior breakfast that morning and face my classmates and a few teachers who went (I think to make sure there were no disasters and everyone made it back) with my scorched face. All I wanted to do was crawl in a warm bed and sleep for a million years. But I went, just like I went on the trip. I though I needed to go to fit in. I felt like I didn’t want to miss anything even though I didn’t drink and always ended up miserable at gatherings where there was drinking. So every party I went to since the summer before 7th grade.

Even sharing this story I’m trying not to be so stuck in the past or fearful of the future. I’m trying to live more in the present, be grateful, and take things one step at a time. I want to take moments like the fire on the senior trip and learn from them and move on. I’m working towards this goal, but I still struggle a lot, just like I struggle to hear myself, take care of myself, and do what’s best for me and what I want to do without trying so hard to “fit in” and please everyone else. It’s a lesson I still haven’t learned that well but I keep trying.

In hindsight I’m also very lucky that I didn’t end up burning my face worse, catching my clothes on fire, or developing chilblains or frostbite that night. I’m trying to remember that even though I didn’t know I had Raynaud’s I need to recognize when I’m uncomfortable and especially miserable, and make that the highest priority over fitting in and pleasing everyone else. Hopefully you all can take the same message from me sharing this story. Do what you need to do for yourself and don’t be afraid to take care of yourself. Because you don’t want to end up with a burned face or worse and because our health, comfort, and ultimate happiness are worth it us being heard and doing what we need to ensure we’re ok!

Until next Friday,

Amy L.

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