Permission to believe — Spinal cord injury breakthrough

I wanted to take a minute to comment on the new spinal cord injury research that was published this week, and specifically on what it means for me, personally.

Over the 12 years I’ve been injured, caring people have periodically sent me links to “promising” research. It hasn’t happened often mostly because the field of SCI research tends to move very slowly and there just hasn’t been a lot of news to share, especially not the kind that makes it into the popular media to which most of my concerned friends listen. But from time to time, I do receive emails and texts — sweet, simple missives of hope, blinking dimly like distant beacons through a fog. And when I do, whether the links are for relatively obscure, for-the-scientific-community-only news or the rare spot on 60 Minutes, they have almost never applied to me. It’s one of the reasons I stopped very long ago tracking this news myself.

Well, this week’s news is different.

In case you haven’t heard, a team of scientists led by researchers in Kentucky connected the spinal cords of four men with spinal cord injuries to a kind of portable electrical stimulation, and all four became able to move voluntarily parts of their bodies that were previously paralyzed.

To the uninitiated, this maybe sounds crazy-good. I imagine they are are imagining someone waking up in the morning, paralyzed in bed, then flipping a switch, getting up, and going about the day as an able-bodied person. Usually, I’m in the unfortunate position of knowing better since I am, at the very least, initiated. But for once, I’m imagining the same thing. It isn’t happening mind you, and the technology isn’t advanced enough yet to manage something as complicated as, say, walking. But here’s why this news is still pretty crazy good, even for me.

Almost all previous experimentation on spinally injured people has focused on “incomplete” injuries. Those are the ones that have some, even small amount of feeling or function intact, and they represent the majority of spinal cord injuries. There has also been heavy focus placed on “acute” injuries, those that are less than two years old.

In comparison, my injury is “complete” and “chronic.” That means there was no sparing of feeling or function when I fell (I was completely paralyzed at the time of impact) and the injury is more than two years old (in my case, almost 12 now).

Spinal cord injuries are remarkably different from one another. Placement in the spine, degree and type of injury, plus a bunch of other factors determine the effects of the injury. What looks like a fairly uniform experience of paralysis is actually very nuanced depending on the factors. It follows that the effects of any intervention would be different too, depending on the injury itself.

To give you an example, Christopher Reeve, who was injured at the very top of his neck, gained some results using a supported, treadmill walking therapy because there exists a motor center lower in the spine that could be activated with that therapy and, in his case, that motor center was undamaged. I happen to be injured at the level of that motor center so treadmill therapy is thought not to be a productive therapy for me, and that’s true even though Mr. Reeve and I both had/have complete, chronic injuries.

The position of the research community has always been that the best chance of recovery lay in the acute, incomplete injury, so attention and funding has always been focused there. Not only has it been presumed that these research interventions wouldn’t be effective on chronic, complete injuries (hence my sense that most of this research didn’t apply to me) but even more profound, many in the research community and virtually all in the medical community have thought recovery for the complete, chronic injury impossible.

Well this week, the understanding in the field changed.

Two of the four men involved in this study had complete, chronic injuries. Neither was expected to respond to the intervention. Both did. Both have injuries significantly higher than mine, so there’s a possibility still that I’m in a different category and would experience different results. But the experience of these two men is HUGE, not only to me personally, but to every person living with a chronic, complete injury and, especially, to the field in general which has good reason now to commit more imagination, attention, and resources toward the resolution of chronic, complete paralysis.

In addition, electric stimulation is a departure from much of current research which focuses on the regrowth of nerve tissue which, even if we eventually manage it, would be a lengthy process. If specified electrical stimulation can be advanced to stimulate some of the more complicated processes (and even if it can’t — just regaining bowel and bladder function would have an almost inexpressibly huge impact on my quality of life), it would be truly revolutionary.

To understand the magnitude of this research in my own life, you would only have had to be a fly on the wall this afternoon as Dean and I read one of the articles and watched video of some of the men in the study. For a moment, neither of us could breathe. We just stared at each other, as if a breath or a word might wake us from a dream. Do we dare to believe? We have been together in this experience since the moment it began and nothing has caused in us such a pause. Nothing, in 12 years.

This, my friends, is different. And for me personally, there is potential here the likes of which we have never seen.

And thinking about it this evening, I’m moved by something even deeper.

The scientific and medical communities, based on repeated observation, had come to conclusions about chronic, complete injuries and the damaged spinal cord that, this week, turned out to be wrong. And I am reminded that we don’t know what we don’t know.

It is extremely tempting (and maybe even useful at times) to rely on what is “known,” either directly by ourselves or as reported by others, when it comes to forming our beliefs. And if we understood clearly what we do and do not yet know, that might be a solid plan. But we don’t know what we don’t know. I suspect everything we consider known or understood could change upon the invention of some new tool or the development of a new perspective, which could happen actually any moment. What we know for certain could, simply, be wrong. Tomorrow.

My inner control freak is hardly comforted by that thought. But the real me, the one beneath my anxious, vigilant habits, is smiling slyly. Because today, there is just a little more permission to believe. And not just in recovery from spinal cord injury…. But in anything.

I’m grateful to my community for continuing to believe in recovery from paralysis, for me and all those affected. Dean and I will surely be watching these developments and, of course, I’ll keep you posted. But I really hope what you take from this is a reminder that even if you haven’t seen it before, even if no one has seen it before, it doesn’t mean it can’t happen. And even if everything we “know” about something says it isn’t so, it actually might be. Sometimes, we have to source our belief somewhere else, somewhere deeper. Sometimes, we have to be more brave. Courtesy of Claudia A. AngeliV. Reggie EdgertonYury P. Gerasimenko, and Susan J. Harkema, I give you permission to believe.


For more information about epidural electrical stimulation, check out:

Breakthrough therapy allows four paraplegic men to voluntarily move their legs (Includes the video Dean and I were watching. Thanks, Eric Greene, for sending this one to me.)

Altering spinal cord excitability enables voluntary movements after chronic complete paralysis in humans (This is the actual paper published this week by the research team.)

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2 Responses to Permission to believe — Spinal cord injury breakthrough

  1. Hollye Dexter says:

    Oh Lyena,

    I’m one of those people who would send you every little bit of research and I always felt like maybe I was doing the wrong thing- as I knew you had come to a place of acceptance and maybe I was doing more harm than good. So yesterday when I hear about this on NPR, I hemmed and hawed about whether to contact you immediately. I am so happy this is a hopeful thing. It sure sounded incredibly hopeful to me.

    I mean, not only should we give ourselves permission to believe, but permission to evolve scientifically. It used to be that people died from diseases we can now cure with a small pill, and people were paralyzed from polio.

    Why shouldn’t we cure spinal cord injury? I read Reeve’s book. He never stopped believing we would cure spinal cord injury. I haven’t stopped believing either.

    I love you.

    I see all possibility for you.

  2. Bonnie says:

    Wow. That is just amazing. I just heard your beautiful story on Strangers and immediately looked you up. My grandmother has been on my mind lately because, when she was my age, she had a fall that resulted in an acute, complete SCI. Like you, she lived with grace and acceptance. I somehow missed this story until now. The video is astounding. I expected the movements to be subtle. And the looks of determined joy on the guys’ faces. Just incredible news.

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