Tuesday, October 5, 2010

Things We Teach Children

So I woke up this morning at 6:40 am (before the alarm clock) to a surge of creative energy. That was a first...so I went with it. I ran to a paper and pencil to get my thoughts down and what came out was six small poems that I'm actually pretty fond of. I thought I'd share one today...

                               Things We Teach Children

We don't know that we teach our children:
beauty's a ticket home,
it's the soft thing we want to lay beside—
the bread & butter, and somehow 
it's what we leave behind.

And now I'm told to accept these pills
& my pale, moon face
because it's that or my breath; my chance to walk.
And would you believe 
I had to think it over?

We teach our children to stop breathing.

I wish I were the kind of person who wasn't fazed by changes to my appearance.

But I'm not.

Here is a photo of me and one of my best friends, Vicki, when she came to visit in August (one week on prednisone)...

And here is a shot of us from this past weekend in Vermont (after 2 months on steroids)...


As I wrote about here, the prednisone I've been taking in the interim between two medications has caused some pretty intense side effects (none of which are that pleasant or attractive). I can joke about it all I want - humor really has been an awesome coping mechanism these days - but this weekend I was feeling pretty bad about myself.  I recognize that it's okay to let myself be a bummed out 24 year-old girl.

I know I have bigger and badder things to worry about right now as I stand up to this brutal disease, but I'd be lying if I said this was just rolling off my back. It's hard to be given a choice between walking and breathing and severe changes in my appearance. Obviously I'll choose walking and breathing any day, but that doesn't mean I'm not struggling with this. I just have to remember this isn't permanent; I have to trust that I'll find the right medication for my body soon and this will all be a distant memory.

As always, John has been extraordinarily supportive, claiming he doesn't even notice. While it may be "love goggles" or just his sweetness talking when he says I'm "perfect", it means everything that he's my partner throughout all of this. He makes me feel desired and cherished every day (moon face or not). We just seem to get closer and I'm infinitely grateful that we've found each other. It really feels as if we could take on the world.

Thank you all for reading and allowing me to write; for being there through this journey. I'm wishing you all pain-free days.



  1. oh, my dear maya, what a lovely, yet sad poem. you are a beautiful young lady and i honestly do not see the difference. that is NOT close to a moon face!

    i hear your sadness, though, and do not want to dismiss that. i think we need to reframe what beauty is in our society. who do you find most beautiful? what sets them apart? our bodies will all change and age, can we accept those changes with grace?


  2. Maya, my wife and I have been through some serious medical problems in the 25 years we've been together. I nearly lost her twice, once when she had a stroke 2 days after delivering our daughter. Then there was my MS diagnosis (erroneous), 2 failed spinal fusions and a disabling fall. We have photos of the 2 of us when we first met and in the early days of our courtship and, even though both of us have aged and weathered since they were taken, when I think of her the picture that forms in my mind is always that little blonde sprite I fell in love with all those years ago. I'll bet John does the same.
    Try to remember; what doesn't kill us really does make us stronger! I should know.

  3. Maya, you make suffering easier on me. I know that sounds so weird, but you make things more worth it. You are an inspiration. Don't worry about the outside, just remember who you are on the inside is still the same!

  4. Betsy: You really always know the right thing to say :) Thank you for always understanding, my friend

    Rocket Man: The love you wrote about is so awe-inspiring to me and it sounds like you truly have your soulmate too. Thanks so much for your thoughtful comment - I hope you'll continue reading because I'd love to hear from you again.

    Britta: Your comment is proof that I'm doing something right. You made me cry (happy tears, of course). I can't thank you enough for your words and you should know you have that same effect on your readers

  5. Oh Maya, we all worry about how we look physically. I remember when I was limping a lot. I would walk by a group of men and think, "please don't look at me, please don't look at me...." I think you are strong for admitting it and feeling it.

    I think you must be like me somedays and think, "How did I ever get so lucky?" The men in our lives give us the greatest gift when they find us attractive on our worst days.

  6. Thanks Cathy ;) I know it's a very universal sentiment and that's why I decided to put it out there. I'm so glad you know that kind of love too... you deserve it xoxox

  7. oh my gorgeous Maya, the joys of prednisone.. me and prednisone are not friends AT ALL! I get moon face after a month. As women I say its totally ok to be a lil vain about our appearence regardless about our disease. We often sacrifice our appearences for functionality, movement, vision, breathing, etc. Well besides the point, you look beautiful before and after prednisone. But do something little to make youself "feel" beautiful, because you already are =). I just went and got a spray tan <3 haha and feel pretty damn good!

    x0x0 Andrea

  8. Andrea: Your comment made me feel so much better :) As much as my readers tell me they get from this blog, I get so much more strength from you all. Thank you so much for your thoughtfulness and for understanding what this has been like. I so appreciate your honesty and friendship <3 ps: maybe a little spray tan is in the cards for me too, I've never done it before

  9. moon face or no moon face, you RADIATE beauty maya <3

  10. Julie: Thank you so much - what a beautful thing to say. ps: Is this a Julie I know in real life?)