When my husband and I discussed the idea of our holiday cards this year, we floated a ‘silly’ card to send out to all our friends and family. Something easily staged and very representative of our little clan of gaming, wired, connected lovebugs.
I immediately loved the idea, until I realized I would have to be in the photo.
As many of you know, Lupus and the treatments for my disorder have left me in a body not my own. As strong and as confident as I can be, the steroid weight gain and the chemo giving me bald spots and thinning hair has been enough to make even me question just how important it is to be ‘pretty’ and ‘thin’ in today’s world.
If major media networks were to see me now, would they still have me on their shows to talk election or women in politics? Would my husband’s co-workers or friends nudge each other in the ribs and say things like ‘dude, his wife got ROUND and she’s getting that receding hairline like us men on top!’ and laugh? Would the women just waiting to see me fail have another reason to mock and snicker? ‘Queen of Spain ain’t looking like such hot shit anymore, is she? She’s disabled and can’t work, and she looks like HELL!’
I imagine a million other scenarios, even though I know better. Even though I am, most of the time, strong and confident and ready to take on anyone or anything at a moment’s notice. I will fight for you and for my kids and for what I believe to be the right thing when I get fired up over an issue.
In other words, I know better.
But I am also a realist who understands the type of world we live in. It covets the size zero over the intelligent debate. And it doesn’t matter if you got your ‘unfortunate’ new looks from over eating, medical issues, or (as in my case) chemo drugs and very high doses of very powerful steroids. Ones, I might add, that are working.
So it took everything I had today to allow Megan to photograph myself with my family for our holiday card. And after a deep breath I asked her to photograph just myself with my husband. Because no one in this world makes me feel more beautiful than he does-and I knew once he took me in his arms I wouldn’t think of Lupus, or of how I looked to the outside world, or if anything that outside world said would matter. I just knew we’d laugh and I’d feel beautiful.
It may not seem like a big deal to you…getting photographed while sick. But I have been doing nothing but sitting day after day with an IV in my arm, taking pill after pill, administering injection after injection all somehow sucking the pretty right out of me. At least to those who don’t know that my secret weapons are waiting for me at home.
A man who stands by me through better and for worse. Who kissed me this very same way on our wedding day:
And two children born of that love. Following in the footsteps of their father bringing out my inner strength. Which I am proud to say is something more beautiful than anything on this earth.
Today I conquered my fear in showing you all how I look with this illness ravaging my body. One of my biggest #Operation Eleanors to date. But what I learned was so much bigger than ‘I am not afraid’ or ‘they are going to see how much I have changed’ – what I learned was that true beauty is in the love that surrounds me and lights me up from the inside out. It gives me more than any drug they pump through my veins and makes me stronger than any steroid they administer.
They are, by far, my strongest weapon against Lupus, and they are single handedly kicking it’s sorry ass.
This weapon grows stronger every day, as I grow stronger every day, because we are beating this together, and doing it with the most beautiful forces on earth: love and laughter.
Thank you Megan for capturing so many great moments with my family. You can find her work at MeganHookPhotography.com
All I see in these photos is love. Thank you for sharing your family, your beauty and your wit — I’m so proud to know you!
You’re all beautiful!
You are beautiful. Love lights you from the inside, and it’s obvious.
I love this – that you did the photo shoot, the pictures themselves, your post – and I love YOU, BEAUTIFUL! And your whole family, dog and all.
Looks great to me! Nothing but love. People spend less time than you think worrying about what you look like. Who says you’re not beautiful? You’re strong and brave to share.
Wow. These photos show love.
I’m a fairly recent follower. I don’t know what you looked like *before*, but you look great to me!
While I can’t imagine what it’s like to go through this, I definitely know what it feels like to look to my husband for comfort. This world has a way of breaking people, but when you can pull close your family and friends who know your heart…suddenly the rest doesn’t matter so much. I’m so glad you have them! The pictures are beautiful!
You and your family look beautiful and I love your photos!
I got Shingles in March and have been fighting my way to better health, with plenty of weight I have packed on and I know what you are feeling. I can relate.
What I see in these pictures is not Lupus. I see a beautiful, loving family. I see your strength. Keep kicking the sick right in the ass.
xoxo
You are beautiful.
And these pictures are amazing – I love Megan’s work.
Way to go!
You look great and the love your family radiates is so beautiful. If we all could be so fortunate!!!
You have always been beautiful; that has not changed. All I see is happiness and love when the two of you are together and it shows in the photos. I just pushed the button. You are amazing. Wishing you more love and laughter every day.
You look beautiful in these pictures. You and your husband are both glowing– <3
EKV,
Since my first days on Twitter you have been like a wise older sister to me. As strange as it sounds I feel like you guys are family in a distant weird kind of way. Maybe it’s because you share your life with us so freely.
If anyone in this life deserves a break it’s you and so I think about you and your family all of the time and say a prayer for you and send good vibes your way whenever I have a moment that I think of you guys. Stay strong, stay hopeful and never stop smiling. You guys are champions.
These pictures are love. Pure and simple. I don’t see illness, or thin hair, or weight gain. I see a beautiful woman, a man who CLEARLY adores her, and two amazing, wonderful, gorgeous kids. What a lovely family you have.
I think the photos are just lovely.
Erin you are truly an inspiration.The pictures are absolutely beautiful, just as expected. We have been talking about holiday pictures and cards. I can’t do it. I have had so much medical weight gain, pain, and sickness so badly you can plainly see it all in every picture. This year it’s going to be the kid and the dog. I really don’t understand why I can’t be more positive like you. I honestly think about it a lot. How you are all “suck it lupus” and I’m all “wah wah this is ruining my life” sigh. Keep on pushing Erin. You are an amazing woman.
Megan does great work as always but I saw you on Thursday. I’ll be totally honest. Based on what you had been saying about how you see yourself, I didn’t know what to expect.
I walked away from you, and Aaron, and the kids and all I could think was “damn, Erin is beautiful.” Erin, you shine. I didn’t see a sick woman on Thursday. I saw a mom who’s eyes were lit up, sitting next to her family, excitement on her face.
You don’t wear Lupus. You wear love. You ARE love.
As someone who has seen so many different variations of the outside you? The inner you – the passion, the brilliance, the love of your family and friends, and the indomitable spirit – they’ve always shown through. They did just as much as always when I saw you a couple of weeks ago… I suppose the outside has changed a bit due to all of the crap, but who the hell notices anything other than the obvious love you & Aaron have for each other in those pictures?
Yes, there will be shallow morons who think or even say silly things like “Queen of Spain ain’t looking like such hot shit anymore, is she? She’s disabled and can’t work, and she looks like HELL!” But they’re people who don’t know how much more important spending more time with your family is than “being surface pretty” is. They’re people who think that your dress size is more important than fighting to see your children grow up and that image is everything.
I love Megan’s photos. I love that they show you & Aaron as you guys have always come across – madly in love.
I love this, and I can say without pause that you and your family are gorgeous.
I hated the way I looked on steroids because it was like I was wearing a mask, and I was afraid I’d never see the old me again. Turns out she was in there all along and the only one who couldn’t see her was me.
I see you. You’re beautiful. Truly.
You are lovely and Megan did a fabulous job!
Remember in the movie “Hook” when the one kid pushes Peter’s face around to find him because he’s all grown up now and the other Lost Boys don’t recognize him and he says , “Oh. THERE you are!” and it’s sort of magical that he finds him?
None of us have to do that with you. We hear your remarkable words of passionate love and your politics and your kick-assery on THE DAILY and we don’t have to squish your face around to find you. Your beauty has been there all along.
These pictures are beautiful. They show some of the most beautiful and loving people I have ever had the pleasure of knowing. Let the haters hate, you’re better than they can ever dream of being.
Dammit, there’s something in my eyes. 😉
So much love, so much. These are pictures to be treasured for sure. Megan is SUPERB but no photographer can show that kind of love and happy if it isn’t there. So
Proud of you.
Gorgeous.
You are so beautiful! I have no idea what you looked like before, but that doesn’t matter, you are still gorgeous. I am so glad you broke through your fear, they are fabulous pictures of everyone.
You are a beautiful woman PERIOD. You are smart and funny and you are a fighter, you love fiercely and you are loved with equal ferocity. When I look at the photos above, that is what I see.
Erin, those pictures are beautiful!
You look so happy and in love. I am so incredibly proud of you Erin!
That first photo of you and Aaron is amazing. You look so happy and so in love. That’s all I see. (Well, that and how kick-ass your red door is.) You are beautiful because you have a beautiful heart. That’s all I see.
And if it makes you feel any better, I didn’t do engagement photos because being sick made me gain so much weight that my ring didn’t/doesn’t fit. But you and my mom just convinced me to do it anyway.
Ask Hala what she thinks of you. She’ll tell you that you’re beautiful and she’s always right.
The love radiates through the photos. Beautiful.
So gorgeous. I still see you. Xoxo
I don’t even know you, and this made me cry…Megan you pictures are beautiful
Megan is amazing. And you are gorgeous. Don’t ever forget it!
You are STILL hot as SHIT to me, Erin. lots of love. dc
LOVELY!!! lovely, lovely shots and what an even more lovely message. your family is truly beautiful… in so many ways.
(and good for you!)
Your family is beautiful. You are amazing. It all shows through in Megan’s photos. Plus one million.
A thoughtful and beautiful post. I LOVE Hala’s look in that photo, too.
I’m 35. That’s at least 28 family newsletters I’ve endured since being old enough to remember. And NOT ONE of my family Christmas cards or photos ever captured the honest and attractive emotion that your photos do!
So what if “society” craves size zero? “Individuals” see the person.
Now back to my nanowrimo novel, which hopelessly attempts to put into 50,000 words the love and honesty that you captured in one photo.
You ARE beautiful.
Your inner beauty and strength make you prettier than. any supermodel. Ever.
YOU GUYS LOOK SO AWESOME & BEAUTIFUL. So much so that I had to use all caps. All I can see is LOVE and Happiness!
I’m going to tell Megan that right now…
When I started reading, my first reaction was to say, “Tell ’em to f… off. Who freakin’ cares what ‘they’ think.” However, I think this attitude comes with age, and you’re considerably younger than I am. When you’re in your 50s (ok, ok, extremely late 50s) you’ll see what I mean.
What is important is that you had the pictures taken. Someday in the far future, you’ll look at them and remember the day and the love and be amazed at how far you’ve come. You are forever attached to those other 3 people, and anytime you can celebrate and commemorate that, it’s a good thing.
My mom let me take her photo today — what she calls her “moon face” from steroids and IVIG and whatever it is they are pumping in her.
I was so surprised she let me photograph her — a simple picture holding her granddaughter on her lap at a soccer game.
All I could think of was: You are so beautiful. My mother is so beautiful. And my daughter looks so much like her. Beauty is impossible to hide, even from steroids.
And, Erin, so are you.
This made me cry. You guys are, and always will be, SOLID.
p.s. Watch your mailbox. <3
p.p.s. You are beautiful, as always. I’d hit it.
Erin, I’ve read your stuff for years. You were funny and snarky when I first read your stuff, and I enjoyed it.
But this horrible thing that has happened to you has deepened you. It’s brought power and purpose to your writing. The ordinary, everyday things of your life have become extraordinarily meaningful.
I wish that you had never had to go through any of this. I wish I could just laugh at your posts–and there is still laughter in them–and not see any of the pain.
But looking at you and yours anyone who didn’t know the story behind the pictures would just see a loving couple, a loving family.
You are far, far, FAR more beautiful now than you ever were before!
And your husband clearly knows it, wonderful man that he is.
Display those pictures proudly!
Since I don’t see you in person very often, I love seeing pictures of you whenever possible. And pictures of your adorable family are a total bonus. xoxo
These are incredible photos, as they do show what’s truly important. My aunt is in her 80’s, and she’s lived many years with lupus. She’s one of the most beautiful women I know. Her eyes just have that sparkle. 🙂
Erin, you are nothing but an inspiration to all of us with your candor, courage, strength and beauty. I know how it feels as I gained weight in the past too and I understand how the world sees us differently at another size. But you are so much more than that and are blessed to be surrounded by so much love. Sending you good health vibes and wishes for a time when the condition is less taxing on you. Blessings from Miami!
You = beautiful + courage