She saw him before she knew his name.

It was opening night of a community theater run — You Can’t Take It with You. Cynthia had sworn off men. Then John walked in late to the party at her house, and she turned to her girlfriends and said, Who is that fox? I’m going to marry him. Her mother introduced them later that night. Cynthia, who had stood in front of thousands, could not say a word.

He took four months to call.

They never really dated. They became best friends first. He helped her through an old heartbreak, and then one day they weren’t friends anymore — they were a couple. There was one near-ending early on, when John said out loud that he was afraid of failing her. The next morning, he asked her to marry him. That was forty-six years ago, counting from September 15th.

She will tell you they are opposites. He finishes her sentences before she’s done. Cynthia is the cannon — fast, spontaneous, twenty answers ready before John has finished hearing the question. John is the slow burn. I have to go four questions back, he’ll say, and I need a cup of coffee. She works a room in seconds; he takes time to warm up. She has the audacity; he has the patience. They are, by their own account, perfectly mismatched.

The sound of tectonic plates

Cynthia was a dancer. Six hours a day. She had trained her body and she had complete command of it. People pushed her toward ballet companies and recording contracts, but she had one plan — she was going to be a film actor, and she would carry the dance and the music into that. Nothing else mattered.

At twenty-one, she tore her hamstring. She heard it go. In her telling, it sounded like tectonic plates. She knew, in that instant, that this was not a pulled muscle. She had lost what she had spent her life building.

She kept performing anyway. Reno. Las Vegas. Seven nights a week. She wrapped the leg in cellophane, iced it and heated it between shows, and during the day she crawled to get herself to the theater. She did anything not to lose the career. The end came when the pain crossed from the right leg into the left. She remembers standing alone in her dressing room, looking in the mirror, and saying it out loud.

“It’s all over.”

It took thirteen and a half years to get a name for what was wrong. Reflex sympathetic dystrophy — what we now call CRPS. Looking back through her records later, she found “RSD” written once. No one had ever said it to her.

What they said instead

What they said instead was that she was crazy.

One doctor drew a picture of a hamstring, looked at her, and said, Yours is tight — that’s the way I like my women. Cynthia says she heard that kind of thing all the time. It made her ashamed. She did not want anyone to know what was being said to her in those rooms. Her mother, who took her to appointments, told her to stop wearing makeup — and said plainly that if a father had been bringing her instead of a mother, they would not have been treated that way.

She grew up on Marcus Welby. She believed doctors made you well. She could not understand why anyone would think she invented the very thing that was taking her dreams away.

The chair beside

John wasn’t in most of those early rooms. He was still performing, trying to save money for the future they had planned, while Cynthia’s mother carried her through the appointments. What he watched, from where he stood, was someone fully alive being stopped mid-stride and put into a bed. He says he carried that with him every day for years.

He thought it was his job to fix it.

He was the man; he was supposed to be the knight who would slay the doctors and the disease. When he couldn’t, he felt he was failing on a massive scale. He once told Cynthia that if she were with a different man, she might get better. He believed it at the time.

It took him years to learn the truth every care partner eventually meets.

He could not fix this. What he could do was stay.

So he learned a different job. He calls himself the legs of the operation. He cooks, he cleans, he feeds the cats, and he feeds the squirrels first thing every morning. And on the hard days — the minus-eights and minus-nines on the scale he carries in his head — he does the thing that took him longest to learn. He keeps a lid on his own feelings, so he is not part of the problem. He stops trying to talk her out of the pain. He does not say it’s going to be okay, because it isn’t, and because saying it does not help. He lets her rip. He listens. He validates what she is feeling and stays in it with her, because he has learned that an eight today can be a plus-two in a couple of days.

Cynthia learned something too. She used to hold the pain in, because she knew what it cost John to hear it. Now she says it out loud — I am in so much pain — and finds that the saying of it helps.

And there is a turn in the road most people never see. When Cynthia finally feels better, John sometimes falls apart. He gets, in her words, pissy. She used to take it personally — why can’t we just enjoy a good day? Then she understood: when she is down, he must hold everything up, and there is no room for him to feel anything. When she rises, the room finally opens, and everything he has been carrying comes out. So she sits him down. She lets him be the one who needs care.

But for the grace

Out of all of this, Cynthia built For Grace.

It started with grace, literally — but for the grace of God, I’m still here. Two women with RSD had come to her after a piece she’d placed in the Los Angeles Times, wanting her to start something. She knew they weren’t the right partners, but the idea took root. Then one of them died by suicide and the other attempted it. Cynthia had been thinking about suicide herself. She decided no other woman should be lying in the dark, abused by her doctors, believing she had no worth.

She turned the performer’s skills toward advocacy. No became, in her hands, a future yes. She would call a newspaper, a television station, a Lions Club — anyone — and she would not stop calling until they listened. She would tell her story to any room that would have her, and in every single room, she met the one person she needed to meet next.

Because that, in the end, is what she believes in most: the story.

She tells it like this. She once invited a doctor to speak at the For Grace conference — a doctor who was herself a woman in pain. People warned Cynthia: she will speak as a physician, never as a patient. Cynthia asked her to come as a woman in pain, and she said yes. On the day, the doctor stood up to give her doctorly talk — and stopped. She spoke as a woman in pain instead, and she wept. No one had ever invited her to be the thing she actually was. The other women in the room brought her Kleenex and took care of her. She wrote to Cynthia afterward to say it had healed her, and that she wanted to do it again.

Another time, Cynthia was in her wheelchair in a clothing store and felt sure the woman helping her had once been a dancer. She mentioned she had been a ballerina. So was I, the woman said — and told a story that was almost Cynthia’s own: injured at twenty-one, the right leg, a rare disease she finally named as complex regional pain syndrome. Cynthia got up out of the chair and held her. The whole store went quiet; some people cried. Cynthia saw in her the woman she might have become if there had been no For Grace — and saw that this woman, because there was a For Grace, had walked a different road.

Two kinds of expertise

When Cynthia first learned that people living with pain had not been at the table when pain treatments were designed, she was furious. Wait — people with pain have not been involved all along? That doesn’t make any sense. You would not build a drug for diabetes without people who have diabetes. The person who lives it is the expert. No one else fully gets it.

And here is the piece we too often leave out: the care partner is an expert too, in a different chair. After forty-six years beside her, John still says he cannot feel Cynthia’s pain — and Cynthia says she cannot fully know what it is to be the one who cares. Two kinds of expertise. Both are hard-won. Both are necessary.

They will tell you none of it would have worked without laughing. He still snaps a wet towel at her to make her laugh. She still does things that make him shake his head — auditioning for the part everyone said she would never get, and getting it; writing the letter he said she could not write, after she had already sent it. Blanket audacity, he calls it.

Forty-six years. Still here. Still not done.

— Tom