Love, Laughter, & Lupus

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