The Nuances of Lying

Right off the bat, let me clarify this is not an essay about saying things that are untrue. This is an essay talking about the particularities of how I lay in my bed. Oh, Ellen, come on!, you say. I know you like to be clever with your titles, but this is ridiculous— you're going to write an entire essay about how you lie in bed? What is there to say? You get in bed and lie down. End of story.

You sweet, naïve, able-bodied fool, I reply. It should be. It used to be. Not anymore. Not since I entered the ‘you're so disabled you can't shift your bodyweight’ stage. Now, whatever position I am in when I am put in bed, is how I will stay all night. I could call someone to reposition me, but that could involve a lot of explanation and I don't want to wake myself up that much. It's much better to get it right from the start.

The reason why this is even a question right now is because my low air loss mattress died. The process of transferring from Maui to Honolulu happened pretty fast. We were looking for a facility for a long time, but once one was found, the move happened quickly. One of the differences between the facility on Maui and here is that on Maui the facility would provide whatever the patient needed. Here, the patient must provide whatever special equipment they require. The low air loss mattress is an air mattress that moves and vibrates subtly under you. Lying on a static surface causes me to develop pressure sores over time.

Sometimes, when I get woken up at night, I can't go back to sleep. That happened a couple days ago, so I was awake at 4 AM to feel the mattress slowly deflate over a couple of hours. I went from being supported to feeling the metal bed frame below me. I knew this was going to happen at some point, so I did not freak out. I simply waited until 7 AM and called the durable medical equipment supplier I work with.

Now we get into the mechanics of insurance. I love the ease of just buying what I need, but of course the economics of life do not always allow you to do that. If they had had a low-air-loss mattress that I could rent, I would have and I would have been paid back once insurance was approved. I wouldn't have been paid back the entire amount because I would be paying full retail price to get it quickly. The difference would probably have been hundreds of dollars, but my mom would have accepted that, if grudgingly. They did not have a mattress in stock so I have to wait and go through the whole insurance process. Yippee. (please note the very intentional period.)

While I am waiting for my new air mattress, I am on the regular mattress they have here at the hospital. It is fairly firm, but I lay very heavily and my butt sinks into the foam. This means the natural curve of my lower back is no more and right now I have a slight ache instead. I usually like lying flat on my back and that is OK when I'm on the low-air-loss mattress. Now, I might need to be turned on my side a bit and then repositioned every two hours. Sort of like a rotisserie. That accurately describes how I feel right now. I am just a slab of meat on a crappy plate.

Now I can finally tell you about the nuances of how I lie in bed! (Really? Are you sure you don't have any more nuggets of gold on insurance to share?) That slab-of-meat feeling comes from not being able to shift my bodyweight. Whatever it is that animates your limbs and makes you a living thing feels mostly gone from me right now. I feel like deadweight, which sounds bad. And it is very hot, which makes me weak.

The other peculiar thing that happens is I don't have a good sense of what position my body is in sometimes. After my brain surgery, I learned the word proprioception, which, I have to say, is one of my favorites. It means knowing where your body is in space. You can close your eyes and know where your arms and legs are without opening them. I lost that ability after the surgery.

It started with my legs. If I didn't look at them so my eyes could tell my brain where they were, I wouldn't know to move them around a table leg. Now it has progressed up my body to my head. My helper puts a glob of toothpaste on my toothbrush and I like to use my tongue to press the toothpaste into the bristles. When I am holding the toothbrush, I have no idea where my tongue is and I could easily press the toothbrush into my chin or cheek if I wasn't careful.

That fun fact means there is a difference between how I look and how I feel. Ever since the right side of my body went numb in 1996, that side of my body is not alive the way the left side is and it is lighter and has less feeling. The left side is stronger, feels more and sits heavier. My hips are subtly uneven. When I am lowered onto my chair, my right hip lands first and is seemingly in the correct position. My left hip is not even with the right, though, so there are some standard corrections I do to sit evenly.

How we doin’ on the nuance? Are you still with me? When I am lying down, my left side sits much heavier than my right. So while I may look like I am flat, I feel like I am tilting to the left. That is fixed with a pull on the pad I am lying on so my hips rotate a little bit and they even out. I have learned to say, ‘I feel like I am…‘ instead of stating something as if it were a fact.

Sometimes, I have been in the wrong position so long that when I am straightened out, it feels awkward. Then, I look down, see that I am correct and understand I need to put up with the awkward feeling until this position feels normal. Everything takes patience, care and attention until it all works out. Which it always does, 100% of the time! Well, that's not true. Oh no! I don't want to end my essay about lying down with a lie.