“…Shame you had to see him on a Burning Day. He’s really very handsome most of the time, wonderful red and gold plumage. Fascinating creatures, phoenixes. They can carry immensely heavy loads, their tears have healing powers, and they make highly faithful pets.”–Albus Dumbledore, Harry Potter and the Chamber of Secrets, by J.K. Rowling
Slight confession: In addition to being a Star Wars nerd, I am also a Harry Potter nerd (though not as big of one as my husband), and when I’m feeling particularly down (or sick as a dog, as has been the case for the past week), retreating into the Potter Universe tends to make me feel better on both the inside and the outside. There’s something about the world that Rowling created that can’t help but make you feel more warm; more hopeful; more sure that there is some good out there in the Universe, somewhere, even though it might not feel like it just now, while your body is at total war with itself and you’re running a persistent fever, and your nerves are blown to hell in ways you can’t even begin to explain to people. I’ve spent a lot of time in Rowling’s world this week, while I’ve been out of commission, so it’s only a little odd that I woke up this morning with that quote from Albus Dumbledore dancing in my head this morning. I say “only a little odd”, because, out of all of the quotes that could possibly have awakened me this morning, why that one? Why not the brilliance he spouts to Harry in the heavenly version of Platform 9 3/4 at the end of Deathly Hallows, which I most recently watched? Or that great one about remembering to turn on the light? Why Fawkes and his Burning Day?
Because y’all are encountering me on mine. I don’t like to talk a lot about my disability because I don’t like to play the “disabled card”. I don’t want anybody doing anything for me “out of pity”. I also don’t want anybody to see me as weak–ever. And I have some pretty major issues with the concept of anybody ever remotely thinking I’m being a “whiner” or a “complainer” or a “whatever”. But I’m learning a lot about owning things in my life right now, and one thing I need to take ownership of, because it’s doing its best to own me right now is my disability. Turns out, folks with disabling psoriasis (like me) and phoenixes have an awful lot in common….
Phoenixes are ordinarily beautiful creatures; they’re peaceful beings that will protect those they love loyally, but rarely go spoiling for a fight. They’re herbivores, and as Albus tells us in The Chamber of Secrets, they can carry immensely heavy loads, have tears with healing powers, and make highly faithful pets. The same can be said of folks with disabling psoriasis: we also carry an immensely heavy load every single day of our lives, because we live with the constant knowledge that while we might be quite beautiful today, tomorrow could easily be our next Burning Day, and it can come with little or no notice, and then we literally turn to dust (if you could see my forehead right now, and observe how often I’m having to wash my glasses from the “ashes” its dropping, perhaps that allusion might be a bit easier to understand). Our tears also have healing powers: if we don’t let them out, if we bottle them within us, they come out through the skin instead, and, again: bingo, Burning Day. And we make highly faithful pets: Love us, learn to deal with us, learn how our disease actually works, and we will fight and die for you as surely as Fawkes facing the basilisk for Harry Potter! We need our peace, because the moment one thing is out of whack, so are we, and, again, bingo: Burning Day.
When you say “I have disabling psoriasis” to a person, most people generally think they actually know what that means. They think it means you have a skin disorder which can be ugly and painful and embarrassing and really, really itchy, and that that’s the long and the short of it. Television commercials for psoriasis remedies do little to nothing to assuage this false impression of what the disease actually entails. (I hate those freaking commercials, for the record.) In truth, it means all of that and a colossal shit-ton more: it is as complex and, indeed, fascinating, as learning about a phoenix. The worst parts of psoriasis don’t even happen on the outside, as all of the media propaganda (like those damned commercials) would have you believe. No, the worst parts happen on the inside, where nobody but you know they’re happening, because psoriasis is also inextricably bound up with mental disorders (like acute anxiety and depression) and an immune deficiency syndrome (which is the actual root of everything that is psoriasis in the first place). If it was just an ugly, painful, embarrassing, itchy skin disorder, it would be a freaking cakewalk by comparison. By the time things have made it to the outside phase of psoriasis, you’re already out where even the Knight Bus doesn’t run!
I’ve spent a lot of time in the past two years celebrating the fact that my little move to New England has worked miraculous wonders on the state of things with my psoriasis, which it indeed has, but the truth of the matter is, that doesn’t change that immensely heavy load you constantly carry as a psoriasis patient: that one day, the storm is going to hit again, you just don’t know when, where, or how, but it is certain and inevitable and unchangeable that it will. And now it has, and I’m back at Burning Day.
The last couple of times I’ve had a “psoriasis mishap” (read: flareup, as that’s the more common term), it’s all been apparent from the outside, on my actual skin, and steps could be taken, immediately, and no matter how frightening on the surface for all involved, they were fairly easily remedied, and *poof*, you move on. This one hasn’t operated that way, and it has been a completely new drill for all involved, on some levels, even for me; even though I tried to explain, I couldn’t explain well enough until the ball was already so far down the hill there was no turning it back.
No, this one began on the inside, in that mysterious nether realm, somewhere between healing tears and that ability to carry immensely heavy loads, and the fact that my immune system makes a mine field look like a sea of children’s balloons. I was the only one who could feel or see it coming. Even now, as my forehead and my back are the only two really apparent places that “the red menace” is alive and kicking and waiting to turn my life into a living hell, I am forced to realize steadily that while I’m on an upswing today, tomorrow could be something I don’t even want to ponder (much less ponder for the people around me). What’s happening on my skin is only the tip of the iceberg; what’s happening in my skin is what’s causing the Burn. And I should have explained that better long, long ago to everyone who loves me–and to all of you, and possibly even to myself–but it wasn’t until this morning, with Albus Dumbledore’s words dancing in my head that I really realized that fully. So, here I am, explaining, or, at least, trying to.
It’s no secret to any of you that I’ve been trying to get my business off the ground for several years now, only recently having changed direction somewhat and become more laser-focused since about September of 2015, with mixed results, some of which are glowing and some of which make me literally sit with my head in my hands and cry for hours. That’s how you’re here, reading this in the first place. That’s how I’m here, typing this in this particular forum. What is a secret, and what I would’ve liked to keep that way, is that whole “crying with my head in my hands” part; that anxiety part; that depressive part. I mean, I’m selling hope here, in a lot of ways, right? I’m selling faith, and a ticket to it, through things like my Tarot Readings, and Dragonfly Theology, and chances are great none of you are going to want to buy any of that if you can’t see it work for the person who wrote that book, or who is providing those readings. When it comes down to marketing, everything says “be passionate, be vulnerable, be real, be truly yourself, but always stay positive“, and I’ve been trying desperately to do all of that, but it has recently occurred to me, whether I like it or not and whether anyone else likes it or not, that it is absolutely impossible to be passionate, vulnerable, real, truly one’s self, and constantly positive–that last bit will kick you in the head every time! Why? Because the moment you commit to always stay positive, you also commit to always wear a mask; you always put up a veneer of positivity between the world and the real you that might be aching, hurting, and, yes, crying into your hands at the computer several hours a week. Remember those healing tears I talked about a few paragraphs ago? Yes, those ones. Well, that commitment to always stay positive makes those healing tears null and void; they well up, they pour out, and they heal absolutely nothing. Instead, they turn to acid that just increases the Burn.
I made a commitment not long ago to be a “whole new, scheduleless Mishy”, and I talked a lot recently about all the epiphanies I was having and about “restructuring my life“, and yet for the past three weeks it’s like I’ve been on a constant roller coaster aimed in only one direction–hurtling down into the abyss–while I’ve been maintaining my commitment to always stay positive, and smile all the way down, without letting anybody see that façade break, and now: Burning Day is at hand, and I’m ashes, and the jig is officially up! And it occurred to me this morning (thank you, J.K. Rowling and Albus Dumbledore) that I’ve done this all before, only last time, I was in high school, and that was how all this psoriasis nonsense got started in the first place. I couldn’t explain it to anyone then, including myself, because I’d never been on the ride before; perhaps this time I should explain it to everyone–including myself–before it’s too blinking late to stop the train!
That unravelling–that hurtling into the abyss while keeping up my positive exterior–was the first flickering of the flame. The diverticulitis on the 29th of December was my immune system joining the party. In a “normal person”, you could fully separate the two things, maybe get one or the other of them under control, and be back out of the woods in no time, but as I’m trying desperately to establish here, there’s nothing normal about me–I’m a phoenix; that’s the analogy we’re going to continue running with here–and though we all tried to desperately un-ally the two things and put on the brakes with all of the above, the train had left the station, and it wasn’t stopping it’s downhill journey anytime soon. Once things reach this sort of critical mass, the tiniest thing on the tracks just makes things worse. I mean, think of an Amtrack heading down Everest, and then picture something as simple as a banana peel on the tracks, and imagine what would happen….
Just when things seemed to be marginally under control with the diverticulitis, stuff was not under control in my head (the anxiety was spinning completely out of control, and so was the depression, but I had made that aforementioned promise to stay positive, remember?), and I tried desperately to keep that a secret from everybody, even the ones I love the most. Especially the ones I love the most. So I was still secretly careening down the side of Everest on those slippery tracks, and WHAM banana peel: in the form of a truly adorable little dog that should have been an answer to my prayers, in the wake of Boo. In truth, for a “normal person”, that’s precisely what he would’ve been, but phoenix, remember? And, bingo: Burning Day. I was up all night Monday night vomiting. The fever hit, and I was bedridden Tuesday. I tried to push for a second day on Wednesday of “doggy daycare”–because that’s what a normal person would do–and by Friday, you could add the beginnings of bronchitis to the diverticulitis meltdown. By yesterday, my hands were sealed in “Aunt Bea Position” from the psoriatic arthritis (I call it that because my dear Aunt Beatrice had psoriasis to the same level that I do, and her hands were always held in the same position to ward off the pain; moving her fingers even a little from that position caused waves of pain that I now understand on levels I wish I didn’t). What is hard for anyone–including me–to fully understand is that all of this is connected, and it is all the psoriasis: it’s not just what erupts on the outside; it’s what’s on the inside that completely devastates.
Ultimately, what’s on the inside is born out of anxiety, and trying to explain anxiety (to the level that it is experienced daily by the person with disabling psoriasis) is rather like trying to teach a cat to roller skate. Even when you “seem fine”, you’re not fine. You’re never completely fine. That isn’t to say that your every night is sleepless, or that you constantly sit around on pins and needles waiting for the next bad thing to happen–what folks traditionally think of when they think of someone with anxiety issues–but it is to say that it is precisely the “immensely heavy load” I’m talking about when I say I carry it all the time. Someone recently described my own battle with it as being like a “cat on a hot tin roof”–like “Maggie the Cat” in the play of the same name by Tennessee Williams, which is actually a fairly apt description. It’s this under-the-surface constant feeling of “not-okay-ness” that doesn’t abate, and literally makes your skin crawl from the inside out. You know, somewhere deep inside, that “something bad” is coming, you’re just not sure what, or from which direction, or even why. It’s like you’re being pressed down by some unseen force, and in that way, it’s very claustrophobic. Your heart races for literally no reason whatsoever. You find it hard to lie still, even though moving hurts, and there’s nothing at all, really, to want to get away from, besides the pain, in the first place. The slightest teeny, tiny thing outside your norm sends you completely off the deep-end, and as much as you wish you weren’t that way, you are that way, and there’s nothing you can do about it, because this is just part of who you became when you joined the “psoriasis club”. It is there all the time, and it eventually reaches critical mass at points where it becomes impossible to tell which came first: the chicken (anxiety) or the egg (the psoriasis). Ultimately, it doesn’t matter which came first, because you’re stuck there, on Burning Day, with both the chicken and the egg, and suddenly you’re the phoenix, and your world is burning, and nobody understands why, and you realize “oh, maybe I should have explained”, and maybe I should’ve started by explaining it to me!
So it’s a shame you had to encounter me on a Burning Day. I’m usually a rather handsome and fascinating creature, but this is the immensely heavy load I carry all the time, and I’m sorry I’ve kept the healing power of my tears bottled up for the sake of always staying positive. I really am quite a faithful and loyal friend, even if it might occasionally be to my own detriment, but that’s the true test of friendship anyway, isn’t it? Too bad when I set out to restructure my life in 2016 I didn’t take into consideration the fact of my “phoenix-ness”. In truth, it has been so long since I had to struggle with it on this level, that I had almost forgotten it myself. In fact, I had hoped to keep it buried, and just be “Mishy”, and not let any of my fiery plumage actually get revealed to the world, because, as I said, I hate talking about my disability, for the reasons given. But you know what? I’m not the only person living with this disorder; I’m not even the only person I know right now who deals with this on a regular basis, so who am I to keep my mouth shut if perhaps I can explain what they are also going through in ways that perhaps they themselves cannot? Isn’t that precisely what I say I want to do with this thing I call my “business” in the first place?
Not talking about all of this–not explaining all of this–to those who haven’t ever dealt with it before (and even to those who have, and by that, I mean to myself) has put me on the rails, hurtling downwards towards something I don’t want to even think about, because I’ve been here before, and I desperately don’t want to go back to that place. There’s a part of me, even as I sit here typing this, that really wishes the fever I’m experiencing right now was from the diverticulitis, or even the bronchitis, and would in fact answer to antibiotics, but I know in my heart of hearts what it’s really from, and I don’t even want to type it because somehow, that makes it more true. And there’s a part of me that fully understands that no matter what you do–or what I do, or what anybody I love does–there is a certain amount of inevitability to an outbreak that only Mother Nature or God or The Universe or whatever you want to call it can fully understand or predict, much less attempt to avoid. Ultimately, I can do nothing to change where I am or where I’m headed, but what I can do is cease not talking about it; not explaining it. And maybe if I do that, I’ll not only help myself and the people around me, but also someone else out there who might be going through the same thing, but cannot find the words as I can.
In the future, if you come here looking for the real me, and for vulnerability, and for passion, and for authenticity, you will find those things, but you may not always find persistent positivity, because that mask is going in the trash here beside my desk; I refuse to wear it any longer. It isn’t fair to you, and it’s killing me. I will always do my best to uplift, to uphold, and to educate; to brighten your worlds, the way so many of you have brightened mine. But sometimes, I may need you to feel and see and understand my tears, the way I promise I will always try to feel and see and understand yours: for tears can be profoundly healing, and to keep them bottled helps no one. No one can live their life in a bubble; not even me. Bubbles too often become cages, anyway, and this little phoenix needs to fly. I’ll try to carry you with me in whatever ways I can, but from now on, this business needs to be a journey, that we’re all on together–not a thing that’s driving me, or even that I’m driving, but a road that we’re all on together. Hopefully we’ll discover some truly fantastic things along the way, and win some treasures together, but even when the road is dark and frightening–even when the anxiety has me so that I cannot sit still in the middle of the night–at least we are on that road together, and like Fawkes, I am faithful, and I hope you will be, too….