Do WHATEVER I Ask
If I actually ask for something, that means there were, literally thousands of things that I didn’t ask for. That means that I already took three days to fold a load of laundry, and not in that cute, “oh I had to dry it three times because I got distracted by the kid(s);” but, in the pathetic, “I fell asleep on top if it,” way, and then I had to re-wash it because I drooled on it, or worse, threw up on it. It means that I dropped, and broke, dishes, trying to put them away myself, trying not to be a burden for once (or, I put them in the wrong place, because I’ve forgotten where shit goes in my own fucking house). It means I skipped days’ worth of eating because I was too weak to make my own breakfast or lunch, and the thought of putting my own plate away, or actually using the microwave sounds like the equivalent of water torture. It means that I, true story, tried to clean the kitty litter myself, and my post-op brain surgery brain forgot about the ammonia in cat urine, so I bleached the box, and ended up nearly passing out from the subsequent mustard gas.
So, if I ask you to help in any way, know that I must really need it. And, I’ll ask you for something small, way smaller than I actually need. Push; I need more. I promise not to gas you out of the house when you show up. I promise not to make you walk over shards of broken dishes, or to clean up vomit-y clothes. I promise to just ask for a little help. I’ll clean up all that other stuff first.
Know You Are Special, because You Were Asked
I don’t haul my un-showered, two-day old pajama self out of the house (or off the couch) for just anyone. If I feel comfortable enough to let you see me at my weakest, know that you’ve made it, my friend. I have let you see what’s behind the shiny exterior the world sees (well, you and the UPS man). Technically, the world doesn’t see much of me, so you are even luckier; you’ve seen the recluse. Furthermore, I’ve let you see the real me.
I've let you see that my hair that has mats in it, real, honest-to-goodness mats. I've let you smell that my teeth might not have been brushed. I've let you see that I haven’t moved in three days, and I've let you open the windows to get some air in. If you can feel special, and honored by that invitation into the third circle of hell, instead of afraid of it, then you are worthy of the crown that comes with the name of honest friendship.
And, I hold tight to those who have held my hand (and brushed my hair - don't worry, I always brush my own teeth!), with and without being asked. Thanks for getting me groceries, picking up my boy, and for just sitting next to me on the couch because I was afraid to be alone. And more, thanks for being grateful for being asked.
Take Care of My Family
We all know my husband has seen some things, terrible things. But, my son has also seen things that no child should ever see. Kids shouldn’t see their mother in an ICU bed. It’s a rule that should be written in the stars, sort of like kids shouldn’t be born with beards and handlebar mustaches.
Thankfully (and weirdly so), my kid has Autism, and he was very fixated on how all the machines worked, and especially the catheter. He wanted to understand, really understand, how all my urine was being collected in the bag, on the side of the bed. So, while I know that he is collecting emotions, the same way he hoards rocks; he doesn’t deal with them the same way we do. Instead, he asked the nurse about twenty billion questions about catheters and urine color.
But, all of this means that my boy and my man need care too. The man who helps me poop, he needs care. The boy who unloaded the dishwasher yesterday, not because it’s his chore, but because I was too sick to bend over, so he did it, whispering (because he was afraid to hurt me with noise), “I’ll take care of you today, Mommy,” he needs care too. They need to be reminded that there’s more to life than this sick person that their life orbits around. They need to feel the sunshine on their faces, the sand in their toes, and the waves slap their legs. Sometimes, I think that they need it more than me.
And a Bonus: Help Me Take Care of My Family
I used to refuse to go out with them. I wouldn’t go to the beach, the pier, the park, anywhere. I’d get these lovely text pics of my men having a great time, with notes that said “We wish you were here!” or “We miss you so much!” My husband finally sat me down and said, “you can’t keep staying home,” and “You can’t do this to us.”
I told him that I was afraid that I’d have a pain flare, a vertigo flare, that I’d fall down and ruin everyone’s fun by having to drag everyone home early, or that I’d embarrass them. He finally explained that they’d rather have five minutes somewhere with me, at an easy pace, than all day somewhere without me, flying around at a hundred miles an hour. He said that they always feel like their life is missing its heart when I stay home like I do, trying to protect them.
I didn’t really believe them until one day, on a very bad pain day, I went on a walk with my son anyway. He’d created, what he called a secret base, out of a swath of trees, off a little path in our neighborhood. It’s very difficult to access, and requires a bit of a hike, up a short hill. For a normal person, it would probably suck the wind out of you for 30 seconds. For me, it required sitting several times, in the dirt, and climbing up, and down, on my bottom, so I wouldn’t fall.
Why aren’t there more guardrails and ramps in nature? Maybe some escalators. My heart pounded in my head, and I was out of commission for two days, afterward. But, I went. As high of a price that I paid for that outing, I am so glad that I did it.
My child, when we got to the top of his little base, said, “Mommy, thank you so much,” and he cared for me the way I’ve cared for him so many times. He held my hand. He guided me up and down, and when he saw I had no more color left in my face, said, “we need to get you home.” He was so authoritative, that I had to do what I was told, from an eight year-old, despite my protests that I wanted to explore more, and encourage his play. I’m not sure when he became the boss of me, but apparently, the dynamic of a family with a sick person at the center, changes things a little bit; it’s much more of a team than authoritarian. Just don’t tell him that.
When I was staggering, in plain view of the whole neighborhood, I asked if he was embarrassed to be seen helping me, or to walk next to me like this, and he said, “of course not; you are my mommy. I just want you to be okay,” then he gripped my hand tighter, encouraged me to lean against him, and said, “I just want you to be safe.”
So, I wasn’t even getting it right. I had been protecting my husband, and my son, all wrong. I thought I was taking the best care of them, making sure they weren’t missing out on anything; and I was taking away the most important part: me. This life we’re living is like a little minefield, filled with tiny little bombs that go off and destroy us little by little, day by day. News of new surgery: bomb. News of a new specialist: bomb. New medication side effects: bomb.
Don’t let me stay out of the field, because that’s also where all the prettiest flowers are. It’s where the playground is. It’s where the sunshine and joy is. It’s where time with my family is, that isn’t on the couch, watching Friends for the twentieth (ahem, two hundredth) time. Remind me that we signed up to dodge the bombs together; put our hands as one, and send us off.