After the Fall

By James O’brien

The curtains were drawn and she was alone, immobile, trapped in the blandness of a room at a Residence Inn far from home. Forced to seek small favors from the housekeeping staff, Sylvia Pearlstein, age 33, told herself on that bleak afternoon in June that if she wasn’t better by December, she’d consider suicide.

A few weeks earlier, Pearlstein’s neurologist had given her the unnerving diagnosis of Reflex Sympathetic Dystrophy syndrome (RSD), a mysterious nerve disorder that’s often triggered by an injury. RSD is characterized by abnormal changes in the bones and skin, including surging heat, discoloration, and extreme sensitivity to touch. Indeed, Pearlstein’s legs had recently been turning crimson, then purple. Without treatment, she’d been told, this excruciating condition could spread to her entire body. And the treatment? Strong painkillers and powerful neurological drugs that brought panic attacks, convulsions, and “other little types of hell,” Pearlstein says.

Sylvia Pearlstein’s journey from healthy active city dweller to suicidal hotel guest began in a single moment. She was with her husband, Dave, and a friend, on the back deck of their home in San Francisco. They had a lovely view from the deck, of rooftops and holly trees and a pretty, bare hilltop in the distance, and they were preparing to host a barbecue that Sunday afternoon. Did they have enough cups, plates, charcoal? Pearlstein moved to take a seat on an ice chest, perhaps to consider this question.

“It was the beginning of what was supposed to be fun,” she says. Instead, she fell off the ice chest, and it was the beginning of the “horrific nightmare mystery” that was to be her life for the next two years. “There was an intense, resonating thud, and I knew right away it was something significant. It hurt really bad, and I couldn’t get up. I couldn’t even breathe, it was so intense.” Her husband helped her to her feet and she managed to get through the rest of the party.

Over the next few days, all she felt was some serious tightness in her back, so she tried to go on with her life—settling into the house she and her husband had recently bought, planning a trip to Vietnam, working at the job she loved with a fine wine merchant. But soon she started feeling sharp pains in her lower back in the area around the sacroiliac (SI) joint, which connects the spine with the pelvis. She consulted chiropractors and an orthopedist, but they all said she’d be back to normal soon.

Only she wasn’t. Any activity or position that put pressure on her SI joint, which apparently had been jammed in the fall, brought more pain. Even just sitting upright soon became impossible.

Her doctors were both confounded and ineffective. Moreover, “medical doctors don’t see the SI joint as a fully functioning joint,” Pearlstein says. So even though it had been jammed, they didn’t think it could be causing any of her problems. Again, the orthopedist said she’d be fine soon.

“I’d hang on to every word each person said to me,” Pearlstein says, but she only got worse. Soon she couldn’t sit; she was only comfortable standing or lying flat. She tried taking a bus to work, standing the whole way, but eventually even that became too difficult.

That’s when she had to leave her job behind—and her world really began to shrink. Dave moved a spare dining room table into their upstairs bedroom, where he could sit for meals while Pearlstein stood at a dresser to eat. She spent most of her time resting and icing her back, and there was one day two months into her confinement when she thought it might be helping: Maybe—just maybe—she could escape her bedroom prison, so she and Dave ventured out for a brief walk. “It was my big freedom,” she says. And apparently, her big mistake.

After going just two blocks, she knew she had to get home—and shortly after returning to her room, while standing at her dresser eating, she felt something give. “I remember pushing my salad back and diving for the bed,” she says. “And that was the last time I walked for months.”

That night was when her lower right leg began to turn crimson, then purple, and the nerves came ragingly alive. She didn’t know it yet, but the RSD symptoms had set in, and her real agony had begun.

The official diagnosis came a few weeks later, accompanied by horror-movie warnings: “I was told by a few different doctors, ‘Do not look at the websites; don’t educate yourself on this.’ A friend who was an orthopedist said, gravely, ‘You need to be really, really headstrong, and you need to fight hard, because not a lot of people make it out of this very well.’

“This was the stuff of nightmares,” Pearlstein recalls. “Your mind starts to run wild. Up to that point I’d clung to the notion that you can’t fall off an ice chest and become disabled. But then I realized there’s nothing protecting me from the worst-case scenario. And knowing that the worst was possible made me feel extremely vulnerable. There are weird diseases out there, and why should I feel like I’m exempt?”

By now, virtually imprisoned in her bedroom on the third floor, heavily medicated and still in pain, Pearlstein was willing to try anything. That’s how she ended up in that bleak Residence Inn south of Los Angeles. She’d read a book called Back Pain Breakthrough, in which author Sue Crossen describes her own similar experience—and eventual recovery. Crossen’s therapy involves a very intense stretching type of massage that aims to unlock the muscles surrounding an injury. Even though it meant setting up shop in a hotel room six hours from home, where Crossen lives, Pearlstein thought it worth a try.

The therapy did ease her pain and allow her to walk, but only temporarily; she still had episodes of intense pain and immobility. When it became clear that she had hit a plateau, as she writhed in agony in her hotel bed, death seemed like the only answer. “It was my one little comfort,” Pearlstein says.

And so she headed back north, a full year after the accident, convinced now that something more would be needed if she were ever to have a full recovery. Fortunately, someone told her to see San Francisco chiropractor Leonard Stein, who was very knowledgeable about SI joint problems. When she met with him, Stein told her that the SI was indeed a functioning joint, contrary to what her doctors had said, and the fact that it was jammed was probably a major source of her trouble. He was able to mobilize it in just one session, but the long months of neglect and disuse, he said, had left the joint and the surrounding muscles too weak to remain in the correct position for very long. Any bit of walking would likely cause reinjury.

Still, this turned out to be a big step toward recovery. With her SI joint again in place, Pearlstein went looking for a local therapist who would help her work on all those muscles Stein couldn’t fix. She found that person the same way she found everyone else who had helped her: through sheer luck, persistence, and word of mouth.

After years of working with hobbled dancers, Jean-Claude West, a specialist in kinesiology who lives and works just north of San Francisco, calls himself a student of human movement. While his patients walk, West holds their pelvis and picks apart the dynamics of their gait. Using visualization, observation, and touch, West detects patterns of movement that the injured develop to compensate for pain. By repeatedly simulating proper movement techniques, he helps patients develop a strategy to override these compensating patterns, to teach the brain and the muscles throughout the body to work together properly again.

Pearlstein says West has “taught her how to walk again.” With her SI joint returned to its proper position, progress was brisk. After studying Pearlstein’s movements, West had her on her feet within two weeks.

Along with the movement therapy, Pearlstein is also getting regular prolotherapy treatments—injections of dextrose into the area where ligaments attach to bone. These injections spark inflammation, essentially fooling the body into thinking it’s been injured and jump-starting the healing process.

Eight months later, Pearlstein’s world continues to expand. She’s in considerably less pain now, but you can still see the memory of pain in her sometimes hesitant, seemingly languid movements—when she goes to the sink for a glass of water, or to the stairs to call her cat. More and more she walks the flatter streets of San Francisco without crutches, sits upright in cars. She even spent hours recently preparing a festive dinner for a friend. Now, finally, after nearly two years, the talk of starting a family has been revived, and new trips are being planned.

“It feels really exciting, and pretty natural and normal, to be making plans,” Pearlstein says. “Not that my recovery is complete, but it’s good just to start talking about my future again, which is something I couldn’t really do. It’s amazing how quickly you forget about pain and misery.”

The end of Pearlstein’s sentence is in sight.

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