A Method of Mapping

I'll admit it. Prior to Robb's accident, much of what I knew about spinal cord injuries came for watching television and the movies, and shamefully, I absorbed a lot of these medical "facts" without giving them a lot of thought.

When a character had suffered a spinal cord injury, they were usually said to be "paralyzed from the {insert body part, here}, down." In my cartoon-image-making mind, I envisioned a sort of invisible equator girdling that person, below which they could neither move nor feel anything. Actually, my cartoon-mind made a red, dotted and yet invisible line that was about two inches thick, which tells you a lot about how I see the world. I was discussing this idea with my sister, and she admitted that she visualized a human-shaped glass of milk, that was filled with a certain amount of paralysis.

Unsurprisingly, things are more complicated in real life, than the way they are depicted in the movies. Robb has paralysis, but the amount and type varies throughout the affected areas. He can feel parts that he cannot move, and vice verse. He can feel the fronts of his legs, but cannot feel much of the backs. He can move and use parts of his body that he cannot feel.

And, his muscles are being re-enervated, which means that the nerves are healing, and that neural messages are starting to travel throughout parts of Robb's body that were previous cut off from his peripheral nervous system. The beginning of this process is also not what anyone might imagine. Martha said that she imagined a slow turning-up of a rheostat dial style switch. This is, and isn't, accurate.

When sensation returns to a given part of Robb's body it is likely to be jumbled, uncanny and often unpleasant. Months ago, when Robb started to regain some more normal sensation, he knew he was going to pee because he toes would curl up. Do you think the doctors all nodded their heads sagely, and said, "of course, Mister Bauer, that's quite normal"? No way! They thought that was as weird as we did. (If you must know, things have settle out, but are still not fully resolved. Robb no longer relies on his feet for information on this subject.)

For a very long time, I have been trying to create a visual image of what Robb has been telling me regarding where he does and doesn't have sensation. I had wanted to do some kind of drawing on his body to document this, as I suspect it would change over time. Robb, as you may imagine, was less keen on this idea than I was.

For one thing, he didn't like to dwell on the parts of his body that he couldn't feel. He has told me that when he is sitting quietly, he can forget what is "missing" and feel normal, and being reminded of what is missing is an upsetting experience. Furthermore, his body is very sensitive, and the areas between "I can feel that" and "I cannot feel" are often best described as "Ugh! Stop touching me! That feels so horribly weird." Also, Robb has wanted to concentrate on feeling whole, and not like a jumble of unconnected parts.

Fair enough.

Now that Robb is experiencing a period where his body is being re-enervated (and this is a slow and gradual process), I asked again of we could try to figure out some way of mapping where he does and doesn't have sensation. And last night, he agreed to let me explore a little.

After some trial and error, we arrived at a method by which I would run a knitting needle along Robb's foot, and he would tell me what he could and couldn't feel. I would raise my left hand into Robb's line of vision, and once I started moving the needle with my right hand, I would wiggle the fingers of my left hand. At that point, Robb would describe whether or not he could feel what I was doing by saying, "no....no....no....no....yes.....yes....no....no....." I would run the needle softly over the same area a few times, and then apply colored tape to map where he could and couldn't feel.


Green tape indicates areas that Robb cannot feel. Pink is where he can. Thick pink lines indicate areas of strong sensation, and any un-taped toes are "good" toes. Robb can feel much of the top of his foot.

The boundaries between "no" and "yes" are not as clear cut as this map might indicate. Often he would describe a sensation of cold, or of feeling water cascading on his skin. (Let the record reflect that I was not pouring cold water over Robb's unsuspecting feet.) I only marked areas as pink if Robb could clearly sense a small metal object moving over his skin.

Robb actually found this exercise really exhausting, and although he didn't say so to me, I imagine that it was somewhat upsetting. We stopped at the foot for a number of reasons. I had an errand to run, Robb was losing patience with the process, and I didn't want to start pulling the hairs off his legs of we ventured higher. We joked that we would continue another time, using bikini wax.

Not surprisingly, for anyone who knows the two of us, this ended up being something of a hybrid between intellectual inquiry and an art project. I was, of course, looking for pattern. And I was fascinated by the apparent lack of one. I was, also drawing visual analogies, in this case to Jane Brocket's exuberantly colored life.

And yes, we did drag the quilt out of the bedroom for photographs. We can't help ourselves.