Now, like the doctors, I wanted answers too, so I went to the library to do my own research. I tried to explain to the librarian what Edna was like, to see if there was a book about her. "Yes, we have books about the handicapped," she said, and asked me to follow her. "Handicapped?" Was that what she was? Was that what I was supposed to call her? Giving her a diagnosis in that moment bifurcated my world, and created an ever-widening gulf between us that I had no idea how to bridge.

When she was fourteen, my parents got state funding to send her to a boarding school for retarded children. "Retarded" was worse than "handicapped," but by that point, I was resigned and indifferent to labels. She was what she was. And I was what I was. I was the normal one.

But then, just before I turned sixteen, something unimaginable happened.

My mother took me to a doctor to find out why I hadn't yet gotten my period. We sat across from a white-coated, red-faced man, who looked me straight in the eye and told me I would never menstruate because I had no uterus, no cervix and no vaginal canal.

My stomach tightened, and I felt my body go numb. I was missing parts! I was a freak, just like my sister, yet different.

He proceeded to tell me that I would need extensive surgery to create a larger vagina, so I would be able to have intercourse.

The second doctor told me there was an alternative to the surgery, "a peasant cure." I was to take lubricated glass tubes and insert them into my vaginal opening every day to stretch the muscle wall. If I did this religiously, he would give me larger and larger tubes until I went to college and found a boyfriend who would "take over."

When I went off to college with my tube tucked away in my suitcase, my mother warned, "Don't tell boys about your condition, they may take advantage of you." After so many years of protecting Edna from an inhospitable world, now she was terrified for me, and I felt the need to hide who I was.

As I grew older, I began to appreciate that who I was gave me a unique perspective, capacity for empathy and ability to connect with others. I became a therapist and began helping people to see themselves as more than labels and limitations. I had also, always longed to be a mother, so I adopted a baby, and felt empowered and gratified. But at my core I was still carrying a secret .

Meanwhile, Edna was living at Camp Hill Village, a life sharing and spiritually based community in upstate New York, where clinical diagnosis was irrelevant. Instead of seeing people's deficits everyone was considered valuable, and Edna thrived there. She gardened, did crafts, and cared for other members too. She found her home and dignity.

I was still missing something.

At age 61, a couple of years after my sister's death, I was taking a midday break from seeing clients to fit in a routine gynecological check up. There would be a new, young doctor, because my warm, understanding, old world Hungarian doctor had just died. Starting over again, I felt that familiar pulling in and tightening, the way it would be any time I went to see a new doctor.

"Are you here for a routine check up?" she asked in a clipped, businesslike way.

"I only need the mammogram referral, because I have this condition where I don't menstruate because I was born without a uterus," I rattled off, and waited with my inner dukes up.

"Oh," she said, without missing a beat, "That's MRKH syndrome."

"MRKH?" I repeated slowly. "What is that?"

"Well, it's a rare birth defect, but about one in five thousand women have it. I'll get the book and show you."

How was this possible? I had lived 61 years of my life, and I didn't know anything about this. There was a diagnosis for this? One in five thousand: that was a lot of women.

"And here it is," she said, walking back into the room with a thick book open.

MRKH Syndrome: named in the 19th century after four doctors: Mayer, Rokitanksy, Koster, Hauser .

Really? It went that far back?

I felt a sudden spurt of anger rise up in me. "I've been to many doctors over the years, had a hysterectomy in my fifties. No doctors have ever told me this. How come?"

"That I can't tell you."

"This whole thing is incomprehensible," I said.

"You could go online. I think there are support groups for this."

Tears welled up in me.

"Well, here's your mammogram referral, and I'll see you in a year."

And with that, she left the room.

Stepping back out into a sunny afternoon, I stumbled back to my office, trying to get my bearings. Was this for real? I was no different than I was an hour ago, but everything felt different. I thought about how diagnosis can limit and stigmatize the way we see ourselves. But now, strangely, this one felt liberating. It connected me to others. I was no longer invisible. On the continuum, way over on the curve, rare but there. Maybe a support group would be good. Just the thought of talking with someone else who had this touched the dark place inside me. "How did you find out?" "What is your life like now?" "Do you think it's because it concerns sexuality and reproduction that the diagnosis was withheld?" Finally, a community for me.

Waiting for a light, I let the tears fall.

Edna, with her unnamable, visible differences, and me, with my unnamed, invisible ones. I imagined her there with me. Her face was cocked a little sideways, and she was wearing a funny hat that was turned the wrong way, but her voice was clear, and her eyes steady, and I didn't have to say anything, because she was already saying to me, "I know. I know."

I stood still for a moment, and felt her hugging me.

With, without, in spite of and through diagnosis, we each had found self-acceptance and connection to others. We were together again.

****

Susan Rudnick, LCSW, is a psychoanalyst and Focusing Oriented Therapist in private practice in Manhattan and Westchester for thirty years. She has published  on the interface of Buddhism and psychotherapy with a chapter in Into the Mountain Stream: Psychotherapy and Buddhist Experience. She has a specialty in working with issues of rest and sleep (Restwelltonight.com).