Alida Brill is a an author, social critic and advocate for women and girls. Her work and expertise span diverse topics. She is a passionate advocate for a new and intergenerational 21st century feminist dialogue. She has written and spoken about the personal and public issues surrounding women and chronic illness, and questions of medical privacy. Her earlier work on the status of freedom, civil liberties and social justice has taken on new meaning in the era of fear in our post-9-11 world. Her latest book, Dancing at the River's Edge: A Patient and Her Doctor Negotiate a Life With Chronic Illness is a personal dual memoir, written in collaboration with her physician, Dr. Michael Lockshin.
Ms. Brill poignantly states in an interview for Dancing at the River's Edge that part of the impetus for writing the book was for the parents of girls and for young women themselves to awaken to the life that she lived...and know that they can live a life with a chronic illness, but not be solely defined by it. This sentiment is highlighted by a story she wrote and often mentions at speaking engagements called "A Crazy Girl."
A Crazy Girl - by Alida Brill
I was 12 or perhaps 13 the first time I heard a doctor suggest that perhaps there was something else wrong with me. — Something other than illness. — Maybe I was a Crazy Girl. It was said in different words but it was said in front of me. “You know it might all be in her head.” I was too bright not to know what this meant. My mother had old-world ways and with remedies in her repertoire, she melted paraffin and made wax gloves for me with the warm liquid, not too hot, but comforting. She had read somewhere that melted paraffin soothed arthritic hands and mine looked like claws. She also had observed me trying to get out of bed. Standing absolutely still for minutes I was unable to take a step because of intense shooting pains in my ankles and feet.
There was something wrong for sure. She would permit doctors to use the words “growing pains” as I was reaching a height beyond any family genetic code, except for my father’s mother. That was as relevant emotionally as factually. My grandmother and my mother hated each other. If something or someone could be blamed other than my mother’s claim it was her fault because of her advanced age at my birth — she happily would have passed guilt in the direction of my father’s mother. Neither woman was responsible. And, no, I wasn’t making it up —it wasn’t all in my head.
I remember my mother shrieking at a particularly opinionated doctor. “It’s in her bones, not her brain, you moron.” My mother had little difficulty being disagreeable, uncontrollably enraged, screaming, acting out in a variety of dramatic tirades. This was one of the few times I enjoyed a maternal outburst.
It wasn’t too long before we moved into a new realm of conversations with doctors who employed words that were harder for me to decipher. But only briefly did I remain unaware of their presumptions about me. Psychosomatic illnesses, and hormonal surges are phrases I recall. Whatever they said and however they uttered their hypotheses it all meant the same thing to me. I was a Crazy Girl. My entire life as a teenager was filtered through this prism. I thought, “They think I’m crazy and I’m not, but I know I will never convince them otherwise.” So, I chose to become mute much of the time during medical appointments. Intermittently, a strange blessed relief appeared mixed with horrific pain in the form of hugely visible flares. It was a relief because they didn’t think I was crazy. At last, I was of real interest to them. They took me seriously during these episodes. And a part of me hated them for that.
When did I become a feminist? Right then, as a child, long before the words feminism or feminist were well known to me. It was just about the time Betty Friedan first began to write and talk about a different kind of feminism. She emphasized that a woman needed an identity beyond wife and mother. But, I became a girl-feminist because I knew I wasn’t crazy and the doctors only believed me when they could see something. They did not believe me when I told them in my own words exactly what happened in carefully detailed language taken from my diary that I used to record my journey of illness.
I learned far too early that male doctors in those years needed to see something before they would take a girl at seriously, however smart she was. I didn’t dislike men or boys, but I did hate many of those doctors. Quacks covered my wrists and arms in copper bracelets. Some form of alternative faith healer made me drink a teaspoon of apple vinegar every hour. (I have maintained a lifelong aversion to anything that resembles vinegar.) A physical therapist of sorts bound my joints with ace bandages. And the real doctors with fancy medical school diplomas hanging on their walls filled me with gold shots, which was a fairly common practice.
A Crazy Girl filled with gold in a childhood that was anything but golden.
Those years still reside inside me and the scenes reverberate. I weep for that child. She is a part of me, but she is also far removed from me. Medical schools changed their approach to some extent but not fast enough to save my childhood or adolescence. As an adult woman I found a doctor who listened even when there wasn’t much to see. So, I must keep the girl I was at a safe distance in order to preserve my sense of compassion, especially in my memories of those doctors. I must keep on moving forward unhampered by bitterness. Yet, sometimes late at night, alone in crunching pain that little girl comes creeping back into my life, walks into my room and sits on my bed. She says, “It’s still real isn’t it? We were never crazy were we? We aren’t crazy now. And we still hurt, don’t we?”
YES! I tell her. WE hurt like hell.Reproduced by permission of the author. All rights reserved.
Fore more information about Alida Brill and her new book co-authored with Dr. Michael Lockshin, please visit her website, http://www.alidabrill.com/.