This is an excerpt from a 1995 collection of stories on pain and spinal cord injury by New Mobility’s former editor, Barry Corbet. In that collection, Corbet also wrote about a newer option to relieve neuropathic pain, called Dorsal Root Entry Zone (DREZ) surgery. You can read Bob Vogel’s update, which outlines Corbet’s reporting on DREZ and shares how DREZ has advanced over the past 30 years. 

Imagine the largest vessel you can carry. It’s full of water and you’re carrying it across a room. You move with great care, afraid that it will get loose on you, that it will get out of control. Chronic pain is like that. You don’t want to jiggle it. People who have it spend too much energy preserving a delicate status quo — avoiding the deluge — and too little time savoring life. 

“The rich are different from you and me,” wrote Fitzgerald. That’s how people who have chronic spinal cord injury pain feel about those who don’t. It’s not that we feel we have a corner on pain. It’s that we know that other people cannot understand. 

After all, we’re paralyzed. How can there be pain?  

“For years,” says one woman who had successful surgery for pain, “all the doctors told my family, ‘You know, she can’t really feel this pain; it’s in her head.’ It’s as if I brought it on myself, not something that I didn’t have any control over.  

“As far as I’m concerned,” she says, “the pain is the disability, not the paralysis.” 

The Unspeakable Nature of Pain 

We talked to a lot of readers with pain, and the language of pain is persuasive. Says one: “In many ways, my accident put me on a different road and I’m thankful for that. But this pain pisses me off. I don’t get why I have the pain. And I am bitter about it.” 

We feel like pariahs. “You don’t want to burden people with it,” says one woman. “Nobody wants to be around somebody that’s got tons of pain all the time, so you don’t like to tell people.” 

Pain disempowers friends and family because they can’t do anything about it. Ditto doctors. Shrinks try to imagine our reality, but it’s hard to imagine pain they don’t have. Everybody else is bugged to distraction by the sheer perversity of it. 

Since pain does not occur without pain-driven behavior, there is a part of us that becomes pessimistic, reclusive and ultimately boring to other people. 

So we avoid the topic. There are exceptions, of course — when people with chronic pain get together, we’re like constipated octogenarians discussing laxatives. (What will it be like when we’re constipated octogenarians?) 

But one of the first things learned by people with chronic pain is that it’s not a subject fit for polite conversation. 

The Closet Life 

There’s no question that chronic pain is isolating. “It makes me a different person,” says one man. “That scares me,” he says. 

“It makes me exhausted, irritable and depressed. So I push my loved ones away from me. That’s a terrible thing in a short life.” 

If we fight the isolation, we have to act in ways we don’t feel. “A lot of it’s acting,” says one para. “I hate hypocrites and I hate two-faced people, and I end up being one.” Another says: “I feel like a master of disguise. Nobody knows I’m in pain.” So pain is a Push Me Pull You between deception and self-imposed isolation. “It’s sort of a closet life that you lead,” one woman says. 

Listen to this composite chorus:  

“I’m afraid of literally being driven insane by it./One of the huge things is the total destruction of energy./It’s so violent./I spend so many hours every day wanting to jump out of my skin./I can’t focus on anything./The pain itself causes so much stress — people don’t understand that./I went for a decade with virtually no sleep./Not sleeping is torture, pure and simple.” 

Underlying all considerations is the seductive whisper of a cure — not for the paralysis, but for the pain. It’s something we try not to dwell on. “It would just be too good to be true,” says one. “You mean this all could just stop?” asks another. 

If there’s only one lesson [I’ve learned from listening to people], it’s that we have to accept the pain, however noxious and unfair, as our personal responsibility. 

There’s no joy in that, and not much compassion, but it’s what the people who deal well with chronic pain do. We embrace it — as old friend or worthy opponent, as rotten luck or a catalyst for growth — every day of our lives. 

Epilogue: A Surpassing Gift 

-Barry Corbet, November 1995 

Last month, 27 years after my spinal cord injury, the medical profession sent me a big, beautiful bouquet. Of course I’d already gotten one in the form of “survived after injury,” and another in the form of prolonged, quality care from a fine physiatrist at a top rehab facility. 

But really, after 27 years, there’s only so much that medicine can do before you enter an era of diminishing returns, of plodding attention to maintenance and prevention. 

Even so — if you have a problem, it’s hard to stop looking for solutions. 

Ever since the early 1980s, I’d been following developments in a surgery for chronic SCI pain called the DREZ Procedure. In 1990, it got a computer assist and is now known as the CA’DREZ Procedure. For some carefully selected people with SCI, it has removed severe pain that has tormented them since the first days of their injuries. I wrote about the CA’DREZ at length in the September issue. 

Yet I didn’t consider myself a candidate at the time I was researching the article. Medicine’s done its best and its worst for me over the years — after all, it hasn’t cured me and it hasn’t killed me — and it was time to make my own peace with what I got and didn’t get. 

Then, last July, my pain pattern changed overnight and the status quo suddenly had zero appeal. The pain was growing every day and by the time of the surgery, nine weeks later, 1 couldn’t tolerate the idea of another day of it. 

On September 15, the neurosurgical team spent 13 hours working on my back. 

By the morning of the 16th, I knew something dramatic had happened. For 27 years, I’d had burning, blossoming pains raking over both thighs. The day after the surgery, that pain was gone. Completely gone. It was just that simple. For 27 years, I’d had a different stabbing and burning in my buttocks. 

That pain’s not all gone — only about 80 percent of it — and I cherish every twinge and caress that’s left. After all, you don’t want to forget who you were for 27 years of your life. 

There has been loss as well as gain. A pretty broad band of sensation — mostly bizarre stuff, but mine nonetheless — has disappeared from my midsection. It took me two days just to get the courage to feel around down there — an ingenue taking liberties with a reluctant stranger — but I expect to get back on a first-name basis with my belly button in short order. 

I can’t begin to express the gratitude I feel. I got lucky, just incredibly lucky, to be around the right people at the right time in the right place. Those people, for the record, were neurosurgeon Scott Falci, neurosurgical nurse Charlotte Gawne and electro-neurophysiologist Lavar Best. 

Nobody can guarantee that kind of luck will jump up and bonk you on the nose the way it did me, but it’s nice to know it can happen — if not in the relief of pain, then maybe in some other troublesome area of your life. 

In the meantime, I urge you to keep living, keep looking, keep tuning out that constant drone that says there’s nothing to be done. Twenty-seven years is a long time. Something might be done.