A Toilet Paper Dress Made Me Cry...No I'm Not PMS'ing

A list of things I showed my husband, on my iPad, that I thought were either interesting, or that I wanted to “do,” yesterday:

  • Snowmen for the front yard, made out of staircase spindles. By the way, Pinterest, you’re a bitch; thanks for always making me falsely believe that I’m fucking, Martha Stewart. Holy crap, a comma makes a big difference in that sentence.
  • My credit card bill, along with photos of my friends, and an explanation of why they deserved such large care packages in the hospital. Not to worry, he’s a kind soul too! And it’s not 1952; thus, I’m “allowed” to spend our money, despite him having earned the bulk of it. Look! Modern times, folks!
  • An easy homemade wreath constructed of leftover toilet paper rolls, re-purposed tears, and holly berries. Just kidding, but I wonder if that is something I could find, if I looked hard enough.
  • That photo-journalism piece that’s pretty much gone viral, about where the Syrian refugees are sleeping. On the “by the way” front on this one, there’s a lot of ire associated with the refugee crisis; of course there is, because people aren’t people, unless we can disagree on things to hate. This whole crisis reminds me of the not-so-distant-past, when we were fighting over whose lives mattered more and it was equally ridiculous. So, I’m reminded of Matt McGorry, who said it best, and you might as well fill in Syrian, or Vets or Homeless, or whoever you are on your pedestal about:
“#BlackLivesMatter doesn’t mean that other lives don’t. Like people who say “Save The Rainforests” aren’t saying “Fuck all the other Types of Forests.”

And then, I showed him this:

   The piece de resistance - I'd add the accents, which I totally know how to place, because I speak French (ooh la, la, aren't you impressed?), but I don't know how to do it on the computer (less impressed now, aren't you?).


The piece de resistance - I'd add the accents, which I totally know how to place, because I speak French (ooh la, la, aren't you impressed?), but I don't know how to do it on the computer (less impressed now, aren't you?).

I cried because while I was showing him this, he interrupted me to ask me, for the billionth time, how I was feeling, if I needed anything, if I should try another nap, if I wanted a new ice pack. Whatever insane kind thing it was, I don’t remember (damn him for being so perfect and thoughtful, right?).

I blurted out, “I’m not just sick, I’m still me! Can’t you listen to the me that’s talking right now?

Not a shining moment for this gal. Perfect husband trying to take care of me, meets weird, raging wife, angry about a toilet paper dress. When sickness surrounds your whole existence, when you have to rearrange your living room to accommodate an end table that fits your prescription bottles to be within your “usual” reach, it creeps up on you as absolutely pervasive.

And suddenly, without realizing it, you realize that you can’t recall the last time you’ve had a conversation in which it wasn’t at least the first thing that was brought up, if not the only thing.

A simple “how are you?” becomes “how are you feeling?

As much as I want people to be aware of the things that are making me sick, the illnesses that are bringing me down, not because they are rare, but rarely known, and we need help; I want the people in my life to remember that I am still here. Underneath all the pain meds, sponges, robes and pajamas, I’m still here.

A toilet paper dress is still silly to me. Laugh with me. Show me things that you think Rachel would have laughed at because she still laughs. Notice how that description made me sound dead? Gross, right? I’m not dead!

So, stop that! So, remember that I still cry. I still want to laugh. Please remember this the next time you poke around the life of the sick. We’re not just sick.

We’re the same people we were before; we’re just us with special, super gross sauce that we can’t wipe off. It’s like when you order a burger with no mayo, but don’t want to send it back. No matter how much you try to scrape it off, it’s still there; there’s always a hint of it, but it’s still a burger. The main flavor is still meat, cheese and bun. Treat us like the burger, and stop paying primary attention to the mayo. Believe me, we wish we could send the mayo back too!