“Pay no attention to that man behind the curtain.”
It’s one of the most powerful lines from the movie and book, The Wizard of Oz. It’s such a simple quote — so relevant to the scene, that we usually don’t think of the symbolism that lies within it.
it got me thinking, though, about “the man behind the curtain.” That’s the real person, after all — the “Wizard of Oz” is who he presents to the public. It’s the image that he WANTS the world to see. It’s who he HOPES to be, maybe even who he feels he IS … except that it’s not his (full) truth.
Two recent photography series’ (one about veterans and one about depression,) reminded me of this notion, too: that what we present to the public isn’t necessarily who we are at our core. Even Kim Kardashian, in all of her polariazing, big-bootyed, much-hated glory, poked fun at the idea this week, sharing side-by-side selfies of how she and her daughter North West act with the paparazzi, versus how she and her daughter act at home.
I think we all do this, to an extent. For we women, there’s our “hair up, sweats on, no-makeup-no-bra” selves at home, and, if we choose, our slightly more “glammed up, dolled up” version that we more willingly share with the world. Those of us who live with chronic illness may do an even better job at perpetuating a certain image, while keeping the full scope of ourselves hidden.
I, for one, revel in the fact that, although I feel like a 90-year-old on the inside, I don’t typically “look sick.” So I share (sometimes too many) selfies, particularly if I’ve recently gotten my hair done, did my makeup that day, or am feeling particularly fresh in a certain new ensemble. I want people to see THAT version of me: the Michael Kors-toting, Chanel-sunglasses-wearing, hair-done, nails-done, everything-done, version.
That’s who I feel like I AM, after all. The “sick” self doesn’t feel like me … or, at least, it’s not who I WANT to be. It’s not who I want the world to see. It’s not my Wizard of Oz. It isn’t always pretty or Instagrammable. It isn’t always fun. So, of course, I don’t typically post photos of me on my sicky-icky, painy-and-migrainey days. Rarely will you see the version of me who is crying from pain, red and rashy all over, swollen or sore, with an ice pack or heating pad on my knee or my neck or my head or all of the above. Rarely will you see my scars. I won’t be posting the videos where I can barely walk; I won’t live-tweet my bouts of nausea; and I naturally won’t do a fitness check-in on days I can’t make it to the gym. Instead, I will show you my very best self: my “Wizard.” The “paparazzi” me. That’s what most people want to see, anyway, isn’t it? The truth is too ugly for some people to handle.
But, here’s the truth: even though I love experimenting with makeup, and having big hair, and taking pics, and immortalizing my clothing choices with a random #ootd post here and there, the truth is that the illnesses I live with affect me in invisible ways — ways that, even if I tried, I could never capture with my smartphone camera, or any other camera, for that matter. These illnesses affect me in ways that you’d likely never have thought of, or known about. And I ask: can you even handle this truth? Sometimes, people don’t want to see what goes on behind the curtain. And that’s fine. If you don’t, stop reading right here. But if you DO want to know? — here you go:
Head, Shoulders, Knees, and Toes: Autoimmunity Affects Everything (but it won’t affect my smile.)
Head: I live with chronic systemic migraines. I have a migraine as I write this. It’s hard for me to focus. My hair has also gotten thinner and more brittle due to Sjogrens syndrome, and a drug called Methotrexate. I have a large scar at the base of my skull that looks like train tracks or a zipper. It is from a brain surgery for something called Chiari Malformation. My hair won’t grow back over it, and it itches from time-to-time, reminding me that it’s still there. I sometimes feel lightheaded, too. I work all kinds of magic to make my hair look acceptable.
Eyes: So, yeah … I have blind spots in both of my eyes. It’s called Bull’s Eye Maculopathy and is from an RA drug called Plaquenil, that I used when I was younger. I also have iritis, which is inflammation of the iris, also related to juvenile rheumatoid arthritis. I have dry eyes, related to my Sjogren’s syndrome. When I was on one medication, some of my eyelashes fell out. My eyes also hurt me whenever I feel a migraine coming on. They at times get blurry and fuzzy when I’m having an “aura” from a migraine. Plus, I almost always have dark circles under my eyes, probably just from the constant battle my body is fighting to stay healthy! Thank goodness for makeup.
Ears: I have pretty much nonstop tinnitus (ringing in the ears) and some upper-register hearing loss. This is all either from chronic inflammation or vitamin deficiencies related to celiac disease. It went away temporarily after my brain surgery, but came back, and is worse when I’m battling a flare or an acute illness. I’m sure listening to my Beats full-volume at the gym doesn’t help, either.
Face: I get a red rash on my cheeks and across the bridge of my nose, rather regularly. It is a sign of inflammation within my body. It can also be triggered by exercise, sun, or heat. It is called a malar or butterfly rash, and is related to lupus. I’ll admit that, at times, the rosy blush on my cheeks doesn’t bother me. But when it’s uncomfortable? It does. Sometimes, my face also gets swollen or extra-round when I’m on prednisone for extended periods of time. This is why, if you look back at photos of me, you’ll see variations in my face shape. I hate “steroid-face.” That said, steroid-face is better than what happened to me in college: Bell’s Palsy. Half of my face was paralyzed. For months. And months.
Mouth: I get a dry mouth sometimes due to sjogrens. It can also cause my mouth to just “hurt” without any sign of ulceration or injury. I get strep throat often, too, probably because of a wonky immune system. I also get painful RA flares and TMJ in my jaw. For someone who talks a lot, this isn’t kosher.
Thyroid: I have nodules on my thyroid, which likes to occasionally sporadically misbehave. In the past, it’s been both overactive and under-active. Thank goodness I’m not on meds for it anymore. It seems to be functioning semi-normal at the moment.
Neck: See above re: thyroid. I also get random swollen glands frequently. This is apparently just related to all of the inflammation in my body from these diseases. Part of my brain surgery was also a neck surgery. They removed my C1 vertebrae and I have extreme (very painful) muscle spasms and trigger points in that area and all throughout my neck.
Throat: I have chronic acid reflux or GERD, likely related to my Celiac disease. I’m also prone to strep throat and esophageal spasms (which can be scary.)
Sinuses: Every day I wake up with a stuffy nose — partially because of dry air, partially because of inflammation, partially because of a deviated septum, sometimes because of sinusitis.
Shoulders: I get terrible muscle spams in my shoulders (scapula, trapezius areas) and they don’t respond to massage or muscle relaxers. My shoulder (that I used to pitch and throw with when I was a softball pitcher) was where I first started feeling flares and noticing JRA (juvenile rheumatoid arthritis) symptoms. (Side note: I miss softball!)
Joints, Muscles: While we’re at it, I should just state that literally ALL of my joints and muscles have the potential to be affected by these conditions, and most of my joints have flared already at one point or another in my life thus far. You’d be surprised to find that you have joints and muscles where you didn’t even know you had joints and muscles! The illnesses that I have been diagnosed with that affect muscles and joints are rheumatoid arthritis, osteoarthritis, mixed connective tissue disease, lupus, sjogrens syndrome, and palindromic rheumatism.
Heart: I have sinus tachycardia, which means that my heart rate runs fast, and will speed up quickly for no reason at all. It’s landed me in the hospital a number of times but is considered a benign arrhythmia. On a more-fun note, I’ve been told I also “have a heart of gold.” hehe 🙂
Chest: I occasionally get costochondritis which is chest pain due to inflammation. Additionally I get pain from acid reflux. Plus, I have painful cysts all through my breasts. Some are solid, some are cystic. All are (thankfully) benign, but they hurt. Ladies, check your bubbies often!
Stomach/GI Tract/Intestines: I have chronic nausea of unknown origins. I have a history of gastroparesis. I have a history of villous atrophy and of dysplasias in my intestinal tract. Because of celiac disease, for a long time, I had an autoimmune reaction in my gut when I ate certain foods. The resulting damage made it difficult for me to absorb essential vitamins, minerals, and nutrients from the foods I was eating. These vitamin deficiencies caused a lot of problems, and occasionally still do. I also get random stomach aches from time to time. I’ve seemed to develop a lot more food sensitivities after going gluten-free. Luckily Shakeology has helped my GI issues and has even helped with fatigue.
Feet: I have a tarsal coalition (which is congenital) and other structural damage in my feet from years of walking with a limp.
Back: I have mild scoliosis (where my spine curves a bit,) lordosis (something with my neck curving the wrong way,) and rotation of the spine toward the mid-section, as well as chronic tailbone pain. BUT: the tailbone pain may be because, how shall I say it? … “baby got back.” 😉
Cysts: I have random cysts and nodules in/on various parts of my body. They’re benign and don’t hurt, but they’re scattered about.
Neves: I have occasional nerve pain. (Neuropathy.) I’ve also experienced tingling and numbness in my extremities. I suppose Bell’s Palsy could be related to nerves, but I am not sure…because doctors aren’t even sure! Additionally, I have POTS – Postural Orthostatic Hypotension w. Tachycardia Syndrome. It may be an autonomic nervous system issue, or could fall under the “circulation” category, I guess!
Blood: My blood is sticky and viscous; slightly prone to clotting because of little cysts on some of my cells that are a type of biofilm. I’ve also been anemic. (I like to say, though, that my blood type is glitter!)
Bones: I have osteopenia, the precursor to osteoporosis.
I alluded to the fact that all of my joints are affected by these diseases, but it’s worth mentioning that my knee, neck, and wrists are of particular concern. These are the areas that cause me a lot of pain, and, sometimes, difficulty. I suppose also worth mentioning is the unrelenting fatigue, which has been improving, but can still be hard, some days.
Do you believe that I may be forgetting some stuff, too? it’s true. The funny thing is, though, that until I sat down to write this list, I can honestly say that I don’t go around thinking about, worrying about, or whining about this stuff day-to-day. It’s all just a package deal, part of who I am, and part of the cards I’ve been dealt.
I’m sure now that you can see why I choose to present a healthier, stronger person to the world; why I choose to highlight the best version of myself to the public through my selfies and blog posts and Instagrams. But, I don’t think that these hurdles and shortcomings and scars make me any less beautiful. So, I’m proud to share with you the (wo)man behind the curtain, through this blog post today. It was a difficult one to write, but, I cannot be ashamed or embarrassed of who God created me to be. As Lady Gaga says, “I was born this way” – and I’m so happy that I was. One thing I can say for sure is that every smile you see from me is genuine. I may sometimes smile through pain, but I’m always happy to be alive and living this life that I love, with the people I love, doing what I love. These health issues will never take away my smile.
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