I’VE arrived at the conclusion tonight that I truly don’t know anyone with SCI. I’ve met and spoken with many individuals who have SCI; but, really, do I know them? I don’t think so. I don’t know their struggles or experiences. The 5-10 minute conversations fail to impress me at the deeper level, at the heart or soul, sad as that is for me to admit.
Granted, by no means am I emotionless or unsympathetic. When my wife broke her wrist on her right hand, she was unable to do certain tasks without assistance; hold a fork properly to eat, or button her jacket on a cold day. I realized then that some people with damaged spinal cords live with this level of disability, only magnified ten, a hundred, a thousand fold. And more so, it is permanent.
Where do I fit? I study SCI. In my daily life, SCI is an animal model that has sustained a significant trauma to its spinal cord, which I then proceed to study (in great depth) in order to discover the mysterious underpinnings of the disease. But, at the end of the day all I have are a spreadsheet of numbers, a great many pictures, and a small research narrative derived from the original hypothesis, and simply the question: “Why are you paralyzed little rodent?”
Of course, there are other questions that I ask of my subjects, such as: “Why do you exhibit electrical and behavioral evidence of pain?”
We have many answers; I’ve discovered some. Without going into details, however, such answers and evidence are cold, unassuming. Purely empirical. Without any context, a piece of data is meaningless. So, as a scientist, we determine from the literature a picture in which the data fits within; so we have this large quilt of evidence that we hope makes sense, medically: a unified theory of the cause of paralysis and chronic pain following SCI.
There is a gap.
Not to disregard the necessity of performing these experiments; they have revealed incredibly rich and vital information that I believe will lay a foundation for studying aspects of SCI and associated diseases, such as neuropathic pain. We do, however, as empirical scientists (and for the majority of us) need to grasp the human side of what we do at the bench.
Science is about humanity, the world around us, but really its more. It’s about the soul. That which craves hope and something bigger. We want something real and amazing. Somewhere in all that data and empirical observation is the problem, that gap. I know somewhere I’m reaching for it through all those long hours in the lab.
This is the problem — I’m perplexed by my need to know, everything.