“Miss, are you you sick?”
“Yes, I am.”
“I can tell because your neck is red.”
I didn’t have the energy or, quite frankly, composure to tell an 11-year-old student that my obnoxious cold has nothing to do with why I’m a red, blotchy disaster. At 44 months T.S.W. and succumbing to the plague that has been infiltrating hundreds of homes, I am admittedly lost.
I’ve been in this random flare ever since I finished the documentary. I’ve never been fully clear, but I’ve been more red than usual this past month. It honestly tears down my confidence and spirit knowing that I may never look like I used to before I got sick. Not just look, but not perform like I used to when I was athletic, and outgoing, and care-free in the face of sweat, or a fun swimming pool, or even a long night out.
Lately, I’ve only been given compliments on “my body”, as in my “nice figure”. It’s never the full package, just the parts that aren’t under dictation from Red Skin Syndrome. It sounds so narcissistic and pathetic to display, but when your only comments about your face are, “you should be taking allergy pills,” and the like, well… it’s demoralizing. When people know what I USED to look like, not the distorted, indefinite image that I am now.
Oh, and when I have people, normally people who don’t really understand my condition, come up to me and talk to me about their “dry skin”, I cringe and withhold the fuming rage that stirs inside, BEGGING to have what they label as their “dry skin”. What I wouldn’t give to know what it’s like to not feel like a cracking, plastic shell. Just two weeks ago I was such a mess that I woke up for work with my tubigrip VELCROED to my face. Literally.
People see pictures and think I’m 100% better, that I’ve gotten on with life. I’d be so grateful if that was the reality. Now, I am not UNgrateful for how far I’ve come and all the life lessons I have learned by growing through this painful process, but I am still wandering in this labyrinth. I sometimes don’t know up from down. Sometimes I have days where I see there may be a way out until, SMACK, I run into a hedge. So much of this is out of my control. There is no protocol, no golden thread to march us out of this bind.
I struggle, daily, with this: physically and mentally. I believe anyone with a chronic illness can relate, especially if it’s one you aren’t able to hide. I feel the weight of this condition crushing my chest, filling it with monstrous anxiety. It is connected to every facet of my life, like a virus I can not destroy. It is not a disease — it’s vivisection with no anesthetic. It’s constantly entering a world that indulges in love at first sight. I live in fear everyday that I go to work that some pea-brained, abhorrent child with an attitude will spout some cruel remark at me regarding my skin because I’m making them do work, and that I will be paralyzed by it. I know, so ridiculous. But it’s the truth.
Which is why, for good reason, I do not invest in a love life. It’s embarrassing enough to wake up alone with a piece of fabric stuck to your face. I don’t feel like adding a potential witness, or the potential of having my heart broken when they leave. I’ve caught a glimpse of the brutality invoked on Tinder, and Bumble, and Hinge, and blah blah blah, just mediums for men (and women…) to judge you solely on your looks, and when they don’t like what they see, remind you that there are plenty more swipes to be had. I’ve soldiered on enough to not put myself in that war. Rejection would not only be probable, but certain. “Briana, that’s anyone using those apps.” Yes, of course you’re right. But it’s still an uphill battle trying to deal with who I am now vs. who I used to be. You don’t like my style, cool; you and I don’t align politically, bueno; but knowing that someone else could potentially leave based on the fact that my condition gets in the way… I fear I would not recover a second time. I don’t want to be anyones burden or charity case. I don’t want to put someone in that line of fire. I’d rather just stay in the dark and live vicariously through my good friends’ romantic relationships and sexcapades.
And I think that’s fair. If you don’t love yourself like you should, then I don’t think searching for someone else to do it is going to cure that missing hole. I have a lot of growing to do, still, with this condition. On the days that I feel low, I can feel feel l o w. That’s something I have to fix, no one else can.
But I will say, I am filled with love and gratitude just the same. For every dark hour, I catch glimpses of sunshine by way of tremendous friendship and familial grace. That is something my condition can never take away. Whether they know it or not, my friends and family are my angels. Their laughter, and nights out, and sweet texts, and moments of encouragement are blessings. They keep my spirit alive. They keep me wanting to fight for myself, and for others; to never give up on this relentless journey. They don’t look at me and see a condition — they just see Bri.
So, even though I am heavy and weary inside my head, and even though my body does not wish to abate this tenacious redness and dryness, I know I still have plenty more to give despite any setbacks. I may not be where I wish to be physically, but I will find my path.
My compass may be faulty.
My heart may be fragile.
But I will find the way out of this labyrinth. I will find my golden thread.
Love, B. R. Banos