Bird Scribble · TSW

The Threadless Labyrinth

“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

3 thoughts on “The Threadless Labyrinth

  1. do you have diet for now? Do you eat meat or some suppliments? What creams do you use?.. It seems not looks like tsw for this period of time, because it’s already too long for it. I understand you feelings and condition very well, may be you need make some changes/corrections in your strategy.. we are all have our own triggers, but at the same time have a lot of in common. My big changes started when i stopped eat all meat, sugar, milk; also i made a great mistake with using creams (not used it properly, it caused hothouse effect and made my skin much more worse). Wish you will find your way to the healthy skin!

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  2. Hi Briana,
    I just wanted to to say hello, and that i still read many of these blogs and I’m still with you in spirit. I’m sorry you’re still suffering after so long, as I am. Its truly tiring. There’s a certain fatigue to my soul now after all the discomfort and itching and flaking over such a long time period.

    I first withdrew from topical corticosteroids in January of 2016, so it’s been over 2.5 years now for me. I’m still not better. Better than I was, but still not better in the important sense: TSW is still a drag on my quality of life. I’m uncomfortably itchy on multiple areas of my skin as we speak. I’ve been doing UV-B therapy, and going on and off different immunosuppressants. I even tried a new medication that was supposed to be groundbreaking called “Dupliomap/Dupixent” and it didn’t help much and game me bad conjunctivitis.

    I know personally how draining this is to the mind, over so long. It’s hard not to be pessimistic about ever returning to normalcy. Initially, I was under the (false) impression that most people recovered to normal within 1-2 years. I can say with confidence that what i’m dealing with now is still worse than the eczema i had before steroids. I’m sure comments like the above from Natalia are well intended, but it’s frustrating to see people say “it’s already too long for it.” I had a dermotologist tell me that like 2 months into TSW in 2016. The truth is, most people don’t even understand what we’re going through, expert or not, much less how long this takes. And I know for a fact from reading your blogs that you -have- tried tweaking your diet and reducing sugar and stuff like that.

    I also wanted to say that I’m sorry that I couldn’t contribute in any way to the documentary you worked on, and also, thank you for putting the time and energy into it. I haven’t checked it out yet but I will.

    On behalf of straight men, I want to say sorry for how much women are judged by looks. I’ve been a part of it and I don’t know how things came to be this way. I’ve been thinking a lot about relationships and attraction and society and things like that, and It’s a part of human existence that does depress me.

    I’m in a pretty low point myself. This TSW thing is pretty cyclical. Here’s to hoping you and I both get decent some time with minimal flaring soon.

    All the Best,
    Elliott

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    1. This is probably the nicest and most empathetic comment I’ve read in a while. Thank you. I had to read the comment above and let her words mainly go in one ear and out the other. They weren’t ill inteded, but nonetheless not helpful.

      Life with this is surely a rollercoaster and i do hope we catch a break. I hate when i hear stories about dupixent not working since it’s the only other avenue i havent really explored, but it does seem to obly help certain people and not everyone. All we can do is persevere.

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