I just spent a week in a wheelchair, where when people looked at me…I could justify being out in public. I could justify it because I had the chair. It meant that when they saw my face, they knew something was wrong…even if they didn’t know what. It was a symbol that potentially this person here isn’t right.
It was my crutch and my excuse that it was ok to be out with other people staring.
I need that crutch, because all I want to do is hide. I want to lay in bed and never leave. I’m trying so hard to not care, but every day my face gets more round and every day clothes don’t fit and every day I worry that even the people around me don’t want to look at me anymore.
Even the kids are wondering when I will be ‘regular’ again. And I don’t have an answer.
Tonight my daughter wanted to play dress up for the Oscars, putting on her fancy dress and asking me to do the same. Of course I have nothing in my closet to fit my current frame…so I found a wrap dress that didn’t fit but at least could act as a robe of sorts to make her happy. We added earrings and necklaces and she very sweetly looked at me and said ‘when will you fit into your pretty clothes again, Mommy?’
I’m not sure honey, but we’re happy I’m not in the hospital. And I can get other pretty clothes. Besides, look at how big I am smiling at you and how much fun we’re having. Who cares what we look like- we’re STUNNING.
And she loved that word, and repeated it back to me several times as I tied her bow.
Stunning Mommy, yes we are just stunning.
But inside I wanted to crumble. I didn’t feel stunning. Which made me angry. Angry that I care so much, angry at this disorder. Angry that I feel embarrassed and humiliated by how I look. So I did what only I know how to do- suck it up, be brave, take control. And I tweeted a photo of my face. And then I tweeted a photo of my daughter and I. I FORCED myself to show this monstrosity of a body to the entire world so it was impossible to hide. I gave myself zero shelter so I could face this stupid vanity issue head on.
And of course many of you were very kind, telling me how beautiful I looked and what not. And I truly appreciate your efforts. Of course my point wasn’t to win compliments to make me feel better, it was to make sure I couldn’t crawl back into a dark corner and not emerge until this steroid treatment was over. Because I want to crawl so badly into that corner. I want to hide under my covers and cry and stay there until this is over. I don’t want to see anyone. I don’t want anyone to see me.
I don’t want them to see how I struggle to walk, feeling every new inch of my body as I move. I don’t want them to see my protruding stomach, and how no matter what I try, I can’t hide it under ruffles or baggy shirts. I don’t want them to see my double chin, and worse yet, to see how it spasms when I yawn…another nifty side effect of the meds i am taking.
I am a grown woman and I know full well that none of this matters. I blogged it already, we’ve discussed vanity at great length. And I’ve heard everything from what I am teaching my daughter about beauty (and believe me, she will have no idea the struggle I have with this until she is old enough to read my blog) to letting my inner beauty shine to letting go of this notion that any part of my worth should be wrapped up in how I look.
And I can be brave, and show the world…but that doesn’t stop the world from looking. And I know the world is looking. And judging. My bravery only goes so far though. My insecurity kicks in somewhere around ‘SCREW YOU I WILL SHOW YOU’ and ‘I DON’T CARE WHAT ANYONE THINKS!’ so I push it further and I sit here and write. I write honestly, and without censoring, and with tears streaming down my face for the fifth time in the past hour. I just watched a parade of beautiful women in amazing gowns, and more importantly I watched men glare at them…as they should.
Let’s face it, men aren’t going to glare at my inner beauty right now. Something that is thankfully lost on my daughter as she repeats to her brother that we’re having fun and that’s stunning.
Something I am striving to teach her, and will hopefully believe before this is over. And until then, I’ll just continue to be brave so hiding isn’t an option.
You are amazing,beautiful, and you are going to kick Lupus’s butt from here to whatever dark hole it came out of.
XOXO
I am sorry you have to struggle with these feelings.They suck,this disease sucks and it makes us feel like this.I hate steroids and what they do to our bodies.I hate the meds that are supposed to help us make us sick.
I admire you for the ability to write and make people listen.You speak for the ones of us that our voice is to soft.
You have H are stunning !!!!
I’m so very glad you and your daughter had such a stunning evening. May you have many many more.
I am in awe of you, your honesty, your transparency, and the bravery it takes to sit there, tears streaming down your face and type these marvelously strong words. I’m in awe of the courage it took to then hit publish/submit.
Yes, the world will stare at your physical presence. But not all of them will be as fortunate as we – to know the strong woman residing inside. To know that YOU are phenomenal. And that? Is totally their loss. ((lots of hugs to you mama))
Warmest,
Lauren
xoxoxoxoxo
EVERY SINGLE TIME that Erin turns her pretty, round face towards a mirror, don’t you know that she embraces so many of us that feel uglified by the treatment we need to survive? Erin, thank you! I love you! You are stunning!
Prednisone is such a hard drug…when I joined Facebook I found a picture of my husband from right after his transplants when he was still on the Pred and I didn’t even recognize him. This too shall pass, though, and good on you for still playing “dress-up” on Oscar night because I know H will remember THAT and not your weight when you did it 🙂
It’s hard for me to believe that you could think men wouldn’t stare at you for your inner beauty right now. You’re doing an awesome job, and your kids are so lucky to have you as a symbol and a guide. As I’m parenting, I try my best to do just as you are: trying to build a values construct for you kids through example. It’s so freaking hard for everyone, and I hope you know that at least some of us are inspired and awed. The rest, they’re just assholes.
I *just* found my way to your blog tonight so I don’t know what you looked like pre-Lupus but the first thing I noticed about you was the way you were smiling at your daughter. People are going to stare because they don’t understand. People are going to judge when you’re in a wheelchair and they don’t know why. But from what little I’ve seen so far, you’re pretty freaking awesome.
Dear, it isn’t vanity. This is your body, scary things are happening, & your emotions are raw, natural, and honest. Don’t fight them – feel them, and let them move on, like a gust of wind. You know, trees get stronger when they bend in the wind. They break when they try to stand against it.
And Lord, who among us hasn’t withered inwardly at the sight of the gorgeous ladies at the Oscars? Yet did you notice how many of them cringed when they saw themselves onscreen? They have the same insecurities. We’re all the same.
You honestly look beautiful in that photo. Not just physically, with the light on your hair and in your eyes–your strength and struggle are beautiful, too. There WILL be a day when we’ll see you dolled up and accepting awards, feeling and looking the way your heart wants you to be. Your family will be in the audience, proudly applauding you. And your beauty /then/ will be all the more stunning because of the victories you’re achieving now.
Meanwhile, go ahead and curl up under the covers for a while, let the storm blow over..keep warm remembering how much you are loved. 🙂
Spot-on, Erin.
When I look at photos of me from chemo, I struggle, because the prednisone that I took with chemo made me swell up too. It does a lot of us. Maybe not as much – but plenty. It’s another assault on our femininity and it sucks.
But isn’t this part of what we feminists were fighting for all along? To have a woman’s value not hinge on her looks? I know it’s hard to philosophize here, but I hope it’s useful. You’re still you. You’re still beautiful. And your daughter’s joy shows that beyond any doubt.
I think you’re beautiful and brave … screw anyone who doesn’t feel that same way!
My husband spent a majority of his childhood on Prednisone for childhood nephrosis. He’s barely recognizable in so many of the photos … his mother still shakes her head when she looks at them.
It’s an ugly drug that does ugly things to people … yet such a sad, necessary evil…
I see you Erin. I see the you that is creating a moment that your daughter will remember, not because of how you looked but because of how you made her feel. I see a woman reacting to her body fighting an ugly disease. I see a woman that refuses to hide. I see you Erin.
I am glad you had a stunning evening and I am so sorry this horrible disease is hurting you. I wish that you never had to deal with Lupus. But you are right weight gain is way better than hospital stay. You can do this. When the steroids are done, you will be thin again, but what matters is most is you will be healthy.
Oh Erin. My heart aches for you. Lupus sucks, and prednisone sucks. I guess this is what they call ‘doing what must be done’, because you sometimes have to fight fire with fire. It just is so rotten that your body has to be the battleground. You will, however, win. I have no doubt in my mind about that.
You are stunning – beautiful, and amazingly courageous and strong.
What everyone else said – your bravery and courage sustain us, Erin 🙂 And you show us that nothing is more attractive than a sassy, outspoken woman 🙂
They taught me, 100 years ago in ‘political correctness’ school, that we are “temporarily able bodied”. Except when we aren’t.
I understand how you feel. I have a medical condition that made it impossible to continue in my profession, and makes me avoid cameras and shiny surfaces. I was diagnosed 10 years ago, and had to decide between “experimental brain surgery” and having kids. I have kids. Now that I’m finished having kids, I toy with going back to see if my options have improved… they’d have to, right?
The thing about this is, though, that we still approach the world as ‘pretty girls’. I don’t necessarily judge that, but I acknowledge it. I have a reservoir of self-esteem & opportunity built on being pretty, and healthy, and educated, and white, the goodies I collected over years that STILL makes my experience different from the experience of women who were born without my luck. I have the confidence that comes from privilege, the sense I can SPEAK to a supervisor and be entitled to results. People see me somewhat differently now, but, until I see a reflection, I behave, in many ways, as I always did.
My mother, a beautiful woman, died of Cancer when I was a senior in high school. A year before she died she was hit in the mouth with a baseball, and they had to wire her jaws shut to stabilize her teeth. Although in pain, and I’m sure worried, I remember she was THRILLED because she lost weight before her show opened. How trivial that all seemed, a year later.
My 2 cents. Sympathy.
When I look at that picture, all I can see is that Hala is absolutely GLOWING. Something is very right in the world when just being with her mom makes a child that happy.
This will be in the rearview one day. Until then, I so admire your courage and determination. You won’t ever get judgement from me on missing any part of your pre-Lupus self. That is 100% normal.
xo
Erin – You are strong and you are loved. Those are the things that matter most. We all get caught up in beauty and appearance, especially on Oscar night, but in the long run that means squat. Being strong, smart and loved is what really matters. You WILL get better and you will be a better person in the long run for dealing with this so honestly and openly.
Kick it’s ass
You are indeed stunning. And you are tough and you are loved and smart and beautiful and you are everything that every other woman in the world should strive to be. You’ll get through this. You’re a fucking inspiration, honestly.
<3
OK, prednisone SUCKS and medical science really needs to get on finding a replacement that isn’t so awful.
That being said, what it’s done to you is not as awful-looking as you might think. The fact it happened suddenly is what makes it seem to suck as much as it does (appearance-wise, at least).
I’m a person who just tends to get fat with no underlying medical condition, unless I absolutely obsess on being not-fat, and there are just such insidious psychological side-effects that are inflicted by our thin-obsessed culture. Watching the Oscars is particularly difficult to do, as it becomes apparent that we as a society absolutely revere the fat-free body type, and that the ladies who walk the red carpet spend an inordinate amount of time, effort, and energy living up to that unrealistic ideal.
A long time ago, it was considered super-hot for women to look like you do, painters painted them, and men glared at them with naked lust. I’m not saying we should (or could) return to that body type ideal, but it would be nice to have a little more balance in our reverence.
Oh Erin. You’re in there, underneath all the swollen-ness.
I see you.
And I see how stunning you are. On the inside and on the out.
The men that matter see your inner beauty no matter what the outside is like.
And every woman who reads your blog sees that beauty shining through this picture.
This is brave. This made me cry. Because I know what’s it’s like to gain weight because of a medical condition. I know what it’s like to hide from people from shame. I know how painful it is to not recognize yourself in the mirror. I also know that people who truly love you do see the changes, but also still see your beauty. You’re beautiful, Erin. I love you
Aww Erin. We’re aesthetic people; it is what it is. If we’re very good, we understand that’s a thing, one thing, not The Thing, and not at all a Who. But yeah, it’s still a thing. And it sucks when that thing, because of other things, is less than what we prefer. How we look is kind of a self thing, actually, that’s what I really mean. And right now in a hundred ways I can imagine you don’t feel enough like your Self, and now you don’t look like your regular beautiful Self. I wish I could give lupus a swift kick. I’m glad you had a strong core, though, and dug into that. That’s just one of the ways you rock. Sharing this, so honest, so authentic — another one of the ways you really, really rock. Hang in there friend.
What is stunning:
courage
mama love
celebrating (even when it is hard)
whipsmartedness
hilariousness
surviving
Thank you for sharing this.
From what I can see, there’s some stunning Fuck You Lupus bidness going down. With a side of ugh and that’s okay. Is that alright for me to condone The Ugh? I also don’t think it’s a very smart idea to tell Hala that we’re having a “Stunning Fuck You Lupus” of a time…tomayto, tomahto.
I heart you for all that you are. Every last bit of you. You’re a model in my eyes. Period.
Prednisone is a cunt.
Thank you for trusting me to see you as you are today.
You gave your daughter a beautiful memory of a night with mommy. Thank you for sharing that with us.
Thank you for being braver than I was. I gained 100+ pounds as the result of a crippling disease, and I let it make me hide. I just couldn’t stand the sight of people who hadn’t seen me in a while trying to wipe the shocked look off their face. Or the people who didn’t know my story assuming it was okay to make jokes at my expense. I skipped high school reunions and former employer get-togethers because I didn’t want to see the looks. I applaud you for being so much braver than I!
Blessings to you, sweetie.
You look like I did. Our cheeks match. But this too shall pass and you do go back to normal, I promise!
The worst was knowing that people knew I looked different but didn’t know why. I wanted to wear a big sign that said “I don’t normally look like this! It’s the steroids!”
Erin:
I am here sitting her sobbing. Touched by your words. Angry for your suffering (why is it “always” the good ones?), Pissed off that your children have to have a mommy who’s not quite right, right now. Through your words, I share your intense pain of this struggle to maintain a semblance of yourself amidst the ravages of the horrible treatment which apparently the only option for you now.
I love you and your family and I will pray everyday that this is the worst and the last of it…and you are on your path to healing.
My prayer:
#SUCKITLUPUS #SUCKITHARD #SUCKITANDDIELUPUS
Now please go away and leave Erin alone.
When I read this and saw your picture, I cried. Not because of the changes that are shouting at you when you look in your mirror. I’ve known you for so many years, I see YOU regardless of how those meds change the outside. I see an amazing, brave stunning woman with her daughter who is absolutely glowing to be able to share something so awesome with her mom.
You, my dear, are a voice for those who can’t or won’t speak. You’re the face of those who are too afraid to be seen and tell lupus to #suckit. You are stunning and it shines through. And you are loved. xoxo
You know what? You have the most important man in the world gazing (not glaring) at your inner beauty. You ARE stunning in his eyes. And in your daughter’s. And ours.
Maybe you can think of it as being in your own size experiment? You know, where they have supermodels put on fat suits and go out in public to find out what it’s like being fat? Yours is just an extended-length version.. erm.. well.. 😛
I actually think this could be very interesting.. useful.. educating.. I really think you could do something with what you’re learning every day. If you can go through and past the pain and embarrassment.
I say this as a ‘fat’ woman. I am petite as well (SHORT) so it’s double great. I am almost 50 and I am ‘almost’ past the embarrassment factor. I have lost weight and gained it back… one thing I always refused to do was hide my naked body.. well and it is true that I hate clothing, I am a closet nudist lol. So therefore I could not compromise my right to be naked worrying about what the hubby would think. So he sees it all, every day, lol.
And he in turn helps me out by making sure I feel sexy… and that does help.
I think there are some interesting sociological intersections going on here. I’d love for you explore and expound upon them. For reals. Hugs girly.
Now I have the song from the movie the Warriors in my head. Nowhere to Run to Baby Nowhere to Hide. Seriously though, I want to just hug you like we moms hug our children and reassure you that everything will be alright. You are a strong woman, Erin and whether you feel like it or not you are an inspiration to so many. Keep on keepin on, sister!
You look great! because you are strong inside.. have faith and everything is gonna
be okay..
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