Paralysis and the Problem with Pillows

Sunday, April 4

2:45 pm

Here is part of my first attempt at dictating a journal entry on my iPhone this morning:

“Well today is been interesting already are I slept pretty well from probably 10 to 1 when the killer came in then did something I don’t remember and then again from 2 till probably 5 o’clock I was in a rug to get a couple of times during nap slept pretty well overall.”

The attempted dictation ended, “Stop dictate tap to leave crap.”

Christine is now typing for me again.

My amazing nurse yesterday was Audrey. The fact that every nurse here is at least as good if not better than the one before has just been wonderful. One of the things I talked to Audrey about was that I am surprised a spinal unit as good as UVA’s doesn’t have a system of supports for the arms and neck other than using a bunch of pillows. The nurses do their best with the pillows, folding and squishing and adjusting them to my preference, but part of the problem with my arms is that over time the pillows compress and seem to squeeze my arms, further reducing my compromised circulation. It makes it feel like my arms are going to sleep more than they already are.

Ideally, I envisioned firm pads to rest the arms on, which could be varied in height with a series of pads of different thickness. For example, pads four to eight inches high, depending on the patient’s needs. Something similar could be available for the head, providing neck support of varying thickness, somewhat like an airplane pillow.

Anyway, Audrey listened to my complaints and an hour later came back with scissors and a large, square foam pad, which she cut up into two rectangles. We put these on top of the pillows so my arms are on something firm and flat and no longer sink into the compressed pillow filling. It works perfectly, and my arms are much more comfortable as a result. If only I could find a similar solution for my head and neck.

Audrey's innovation: my new arm rests

This week the visitation policy at the hospital is that a patient may only have two designated visitors during their stay and only one visitor at a time. Christine and Linda have been tag-teaming this week to keep my spirits up and ensure my care is as good as I keep saying it is. (Christine feels awkward typing further praise and is forcing a change of subject now, but first she has no trouble noting that her mom is a superwoman.)

It feels strange to have paralysis and not be able to do anything. In my case, just because I have paralysis, it doesn’t mean I can’t feel anything. I have sensation in all my extremities, but they feel as if they were asleep. It’s very similar to waking up having slept on your arm, and it’s nearly deadweight. Add to that the feeling that there is almost zero strength in every muscle. Moving anything requires an intense effort. As muscle function gradually returns, the concentration needed to move a specific part of the body is lessened but still requires conscious thought. At this point, I can move my legs nearly as well as I could before the accident, but as you go down the extremity, the feet are still asleep and tingling, and moving the feet and toes requires intense concentration. It is the same with the arms, only they are slower to respond, which the doctors tell me is expected with this kind of injury. It’s very strange to spend five minutes just trying to splay my fingers and to become exhausted from that effort with very little to show for it.

Thank goodness I have both doctors and nurses who continually encourage me and tell me that my progress is not only good but well above the curve. They have to do this without promising that function will fully return, but I understand that. So, with nothing to compare this to, I have to believe them when they tell me that moving my pinky today, even just barely, was a big step. I choose to believe that their assessment is accurate, and I can—and do—take heart from moving my pinky. Honestly, I have not yet gotten truly frustrated. I just do what I feel I have to do. I could say “F*** the world, I hate everything,” but that doesn’t make me get any better any faster. I have been told that the recovery will be in very small increments—smaller than baby steps—and so I have to remember that and be happy I moved my pinky.

If I’m bottling up feelings to avoid frustration, I’m not aware of it and therefore have no way to release those. Do I want to punch somebody? Not really. It was an accident, an unfortunate series of events. There is no one to blame. I could blame myself for losing a moment’s concentration and going off the road, but that’s something I’ve done many times in my life. There’d just never been a ditch in the way before. Maybe I’m frustrated that there’s nobody to punch!