LeaningIN for a clearer vision

This story originally appeared on the Lean In web site, created by Facebook CEO Sheryl Sandberg to empower and connect women. It has been edited slightly for context here.

My hand shook so hard as I dialed the number that I nearly dropped the phone. When the voice on the other end answered and asked for my name, I panicked and blanked out. For a moment, I couldn’t think, couldn’t speak, could scarcely breathe.

What if they don’t believe me? I agonized inwardly. What if they tell me it was my fault?

It was the early 1980s, and thanks to the work of the powerful women’s movement of the previous two decades, the Office for Women’s Affairs on the campus of my university had recently formed a support group for women who had survived violence and assault.

My childhood was filled with trauma and nightmares that to this day I still struggle to describe. It had caused terrible scars that left me, at barely 21 years old, so badly shattered I wanted nothing more than to find some way — any way — to end my misery. I was so depressed and hopeless that death seemed to be the only reasonable option.

Every night, on going to bed, I prayed the same prayer. “God, I think you know me well enough to know I’m not going to do it,” I prayed. “But I wish you would do it for me, and just get me out of here.”

Although I did not yet know it, God was answering my prayer. Not the one I said out loud, but the one that lay so deep within that I could not bring myself even to put words on it.

I didn’t really want to die. I just wanted to want to live.

Finding my voice, and the will to live

Within that group, among women who had stories to share that were much like mine, I found my will to live. And more than that, I found the courage to dare to dream big dreams. I was in that group for more than four years, and in that time, I discovered I had a voice worth hearing. I applied to a graduate program at one of the nation’s top-ranked journalism schools, despite my fears that I would not be good enough. And I excelled in that program, emerging with a master’s degree and a string of successes in the form of published articles and clear recognition of my talent from faculty and peers.

And, I emerged with high hopes for my future.

I thank God every day of my life for the miracle of that group, and for the work of the countless women who made it possible.

Stumbling block

But then I married, and so much of that work came to a grinding halt.

In large part, it came to a halt because, although I had exerted tremendous effort in doing the hard work of changing within, the man I married had not. He saw no reason to change within. There was nothing to motivate him — not even the possibility of a stronger, happier marriage — to examine deeply held and highly destructive beliefs he had learned in childhood. And I quickly realized that if I wanted to stay married to him, I must once again silence my voice.

I have always said that our toughest battles as women will be fought on the home front, with our own husbands, fathers and sons. In many ways, I think I was simply too far ahead of the times to be able to win on a front where many still hold to the pervasive idea that the husband has to be “right” at any cost, where so much lingering, latent suspicion remains that the wife must somehow always be found to be at fault.

A difficult choice

So when a major national magazine, which I had long dreamed of working for, showed real eagerness to interview me for a position for which I would have been ideally suited, I was faced with a choice that is all too familiar to women of my generation. My husband made it clear that he would not even attempt to find a job in New York. Wouldn’t send a resume anywhere. Wouldn’t check the job boards. Just flat-out wouldn’t try.

“We can’t afford to live there,” he said stonily. And that was that. End of discussion. End of that dream.

So there it was. The choice that I and so many others have had to make: Pursue my career ambitions, or stay married.

I chose to stay married.

I cannot entirely regret that decision, even though the marriage continued to spiral downward into an increasingly toxic quagmire. Because of that decision, I have raised two beautiful daughters who are full of life and strength and potential. I have instilled in them all the messages I wish had been instilled in me: to believe in their own dreams, their own worth and their own accomplishments.

But I know there has also been an underlying message for them in the trade-off I made, and in the nagging sense that a husband who truly loved and respected his wife could surely have put forth some effort to make her dream possible, especially a dream that was well within reach. And so my hope for them has always been that they will not be faced with the terrible choice I had to make … that the world will have changed just enough to allow them better options.

Just like old friends

Until recently, I was not certain that such a hope was realistic. Like Sheryl Sandberg, I have had the uneasy sense that so much of the important work that was accomplished by those earlier feminists has been stalled, perhaps even lost.

I feel as though I have been waiting most of my adult life for some evidence that all of that work was not in vain. The high-profile launch of Lean In gives me reason to hope that there are other voices that are once again speaking for change. It’s like reconnecting with friends who have been out of touch for many years.

With that comes the hope that my daughters will indeed be able to fulfill their potential, however they choose to define it for themselves.

And reason to hope, as well, that perhaps it is not too late even for me. Maybe not even for me. As of this writing, I have been free of my oppressive, parasitic marriage for a little more than a year. It’s been a wonderful, powerful year, full of astonishment at how much I have accomplished, how well I seem to be doing on my own — far better, in fact, than I ever did when I was the demoralized “lesser half” of a couple.

So I guess we’ll see what hope lies ahead for me. We shall see.

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A November farewell

Nov. 3, 2014

He was here to fill my aching arms after our little son Christopher failed to come home from the hospital. He was here to welcome the next child, Emily, safely into our family. He was here for birthday parties, sleepovers, first days of school, first crushes. He saw our oldest, Katie, grow into a woman, graduate from college and begin her new life. And he was here just this morning, happy to be let out into the glorious sunshine, although he had not quite been himself for the past few days. “You sweet little thing,” I murmured in response to his happy purr. And now, this evening, as gently and peacefully as entered our lives, our beautiful cat has left us. Goodbye, Mozart, and thank you for 18 wonderful years.

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Thofe Pefky Coffee-Houfes

Coffee HoufesDefarts

 

The original Prohibitionists? In 1674, the Women’s Petition Against Coffee was published in London to protest the sale of this “Heathenish new LIQUOR” because of the effect it was having on their Hufbands. Take a look at their list of complaints.

Well said, ladies.

Because let’s face it. We could tolerate their Goffipping. We could put up with their Impotence, and maybe even endure the occasional Drying of Moifture. But we absolutely cannot, will not, abide thofe deadly Defarts. Now they’ve crossed the line.

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#MyRescueStory

He is balding in many places, and no amount of elaborate combing-over can hide the telltale glow of pink skin underneath. Over the years, his once-musical voice has been reduced to a plaintive croak. If we watch a movie together, he falls asleep and snores so loudly during the most sensitive and touching love scenes I can barely hear the dialogue. His table manners, once so meticulous, have now become truly atrocious, with food scattered willy-nilly in every direction so that it crunches under your feet when you walk through the kitchen.

And let’s not even talk about his bathroom habits, which have grown so shamefully lax I hesitate to invite anyone over any more. It’s too embarrassing to have to explain why my entire house smells of bleach.

Still.

I remember him when he was young and beautiful. I can still vividly remember the day we went to choose him from the animal rescue shelter. He was the prettiest and healthiest kitten at the shelter, snoozing peacefully in his cage with his silky black and white fur highlighting perfect pink ears that flicked gently in the soft Indian-summer air.

We had gone there to ease the heartache of a now-empty nursery that had been intended to welcome home our greatly anticipated second child. Our Christopher died in my arms within minutes of his appearance on earth, and I ached for something small and warm to hold. Although I could not imagine how a small kitten could possibly be expected to fill the void left by a son I had hoped to raise to adulthood, I wanted to demonstrate to Katie, my firstborn, that our lives must keep moving forward, no matter how badly our hearts were broken.

That was more than 18 years ago. In the intervening years, our Mozart has helped us welcome our youngest child into our midst. As far as Emily knows, there has always been a cat who is part of our family. Mozart was here for their first days of school, the endless round of sleepovers and birthday parties, their first crushes. He has seen Katie graduate first from high school, then college. He has seen Emily sail through her entire 10+ years of school with straight A’s. If he continues to hang in there much as he has, he may well see at least one young woman in her wedding gown within the next few years.

And, if our veterinarian has it figured right, he may even still be around to usher in the next generation. At our last well-being checkup, the vet looked into Mozart’s crystal-clear green eyes, nodded, and announced, “Yep. I think this cat’s going to make it to 22.”

As for me, I’m counting on it.

 

 

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Remembering Robin Williams

Good night, sweet prince,
And flights of angels sing thee to thy rest.
~ Hamlet, Act 5, Scene 2

 

Although the final act by this supremely gifted comic and dramatic actor was a deeply tragic one, for most of us it is not the sum total of his life, not what we will remember as his greatest legacy.

For me, personally, it’s not even the impressive body of funny, moving, profound work he did over a long and productive career … nor even the joy and laughter and hope he brought to untold millions.

In the coming weeks, I am sure that much will be written about those things by people who are far more qualified to analyze them for their lasting impact on us as individuals and on the larger culture. I leave it to the experts to eulogize the invaluable contributions he made to the dramatic arts.

No, for me personally, the totality of his legacy can be summed up in his eyes: blue and gentle, they shone with a lovingkindness that seemed to include everyone in the world, however anonymous or petty or undeserving we might be. It was his eyes that I will remember.

What will you remember him for? Feel free to share your thoughts below.

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Half-life takes on a whole new meaning

Half-life (t½)

noun

  1. the time taken for the radioactivity of a specified isotope to fall to half its original value.
    • the time required for any specified property (e.g., the concentration of a substance in the body) to decrease by half.
  2. the amount of time spent actually living your life if you have chronic migraine

You’ve probably seen the ads.

A woman curls up in fetal position on a couch, her back to the camera, while a voiceover asks: “Are you living a maybe life?”

The voice goes on to describe how chronic migraine — defined as 15 or more migraine days a month — leads to living a “maybe” life, full of tentative plans that may have to be jettisoned at a moment’s notice. Maybe you can go to the kids’ dance recital tonight, maybe not. Maybe you’ll be able to get out to the grocery store today, maybe not.

Know the half of it.

Let me tell you. I’ve had chronic migraine all of my adult life, meaning that I am ill about half of the time, and there is no “maybe” about it. If you have that many migraines a month, you’ve got a 50/50 chance on any given day that you’re going to have a migraine. Do the math. Fifteen days out of a possible 30 (plus or minus) in any given month is 50 percent of the time. That’s half of your life.

That’s why I think it would be far more accurate to call it living a half-life, because if you’re sick this often, you  spend half of your life trying to make up for the other half that’s been lost.

A genetic link?

I’ve often wondered if there’s some biological correlation between my condition and bipolar disorder. There are striking similarities, not the least of which is the fact that studies indicate some sort of neurological dysfunction in the same area of the brain for both conditions. In addition, both conditions are characterized by manic swings from one state to another. In the case of bipolar disorder, the swings are of mood, whereas the sweeping changes with migraine are physical but equally dramatic.

This is more than idle curiosity. There is a history in our family of women being afflicted with one or the other of these conditions.

My mother’s mother suffered from migraines for much of her adult life. In her case, the headaches came only one day a month. But my mother can vividly describe how they often occurred on washday. Grandma would rush through the day’s wash with the old-fashioned wringer and tub before she had to retreat to a dark room, from whence she would not emerge until some 24 hours later, ashen and spent.

The good, the bad and the ugly of it

Similarly, I spent my childhood watching my bipolar mother swing crazily from euphoric bursts of creativity in which she would sit at the piano for hours, banging out one complex piano concerto after another, completely oblivious to her children and our needs. On her good days, she could plan an entire program for her school’s holiday music concert in the course of a single evening. These were glorious displays of her extraordinary talent.

But then there were the bad days, where she would plummet into a  pit of doom that seemingly had no bottom to it, and that seemed to need nothing quite so much as to drag me down into the depths with her. Those were the times when I would cringe in my bed in the dark, waiting for her to burst into my room and demand tearfully that I come keep her company in the living room. Once there, she would  recount the day’s litany of wrongs, injuries and slights that had been done to her by life, by other people, by anyone but herself.

There was never an official diagnosis for her condition, primarily because in my mother’s eyes she was fine and everyone else was crazy. So she never sought treatment of any sort. But you tell me. What does this sound like to you?

Like mother, like daughter? 

In reaction against her perpetual emotional chaos, I carefully cultivated a persona that was her exact opposite: determinedly calm, detached and unflappable. I am the ideal person to have around in a crisis, because I can keep a level head when everyone around me is coming unraveled.

But secretly, I dreaded passing on the legacy to my own children.

I dreaded it so much, in fact, that I almost didn’t become a mother at all. As it is, I waited until fairly late in my childbearing years before giving birth to two beautiful, healthy daughters. So far, both of them seem to have escaped either manifestation of this curse.

Still, while my own moods have remained relatively steady throughout my adult life, my physical wellbeing — and the accompanying energy spikes and nosedives — has been rather unnervingly similar to my mother’s wild mood swings.

The legacy limps on

I spent years worrying that the only thing my daughters would remember of their childhoods would be watching their mother crawl around the house on her hands and knees on the days when the pain was particularly intense. It was the only way I could see to the day’s pressing needs, which are always present when there are small children in the house.

Now that they are grown (or nearly so), they can tell me themselves what they do and do not remember. And luckily, they don’t remember any of that. What they remember is going out into the back yard to hunt for flower fairies. They remember spreading big blankets on the living-room floor to accommodate the groups of friends who came for sleepovers, which of course never involved anyone getting any actual sleep. They remember trips to pools and parks and museums. They remember my appearing by their bedsides to soothe them if they awakened in the night. Normal kid stuff.

Whew.

Back in an upright position

These days, the demands on me are considerably lighter than they once were. My neurologist has prescribed a whole raft of powerful prescription drugs to manage the pain. And even if they can’t completely eliminate it, even on those days when the pain is still sort of hanging around and flying at half-mast, it’s still possible for me to function.

Even if the world is spinning dizzily around me as though I just stepped off a 90-mile-an-hour carousel … even if  my stomach is lurching and roiling with a volatile stew of acids … even if the jackhammers are mercilessly drilling craters in my skull … even if I’m so drained and fatigued I’m at the brink of bursting into tears … I can still manage to present the illusion that I am perfectly fine and all is well.

I’m not being a martyr. I just get tired of explaining myself, and I’m not willing to miss out on half of my life–or any of it, for that matter. Sometimes it’s easier to fake it as best I can in the hope that no one notices how grey my skin is that day, or how my hair hangs down around my neck in a limp clumpy mat, or how my eyes are sunken deep within dark rings that look like ghastly bruises. Or how I seem not quite as funny that day, not quite as sharp, a little slower on the uptake in an exchange of witty banter.

And sometimes, faking it can come reasonably close to actually making it.

Those are simply the days I won’t be going to the gym. You probably won’t find me mowing my lawn or washing the windows on those days. And if you’re really observant, you might notice that my face may be just a tad grey, my hair just a tad clumpy, and my eyes just a tad sunken and bruised.

And I just now got the joke you told me two minutes ago.

As a matter of fact …

You might even say I lead a double life nowadays, rather than a half-life. On any given day, there’s a 50/50 chance I am deliberately concealing my true physical condition to keep colleagues, friends and even close family members from guessing how I’m feeling. I take considerable pride in the fact that many people who know me fairly well have never guessed I even have this condition. (Although I suppose some of them are going to know now that I’ve posted this essay.)

And if it’s one of those truly awful days — one of those horrible terrible no good very bad days when even the maximum dosage of those drugs can’t make a dent  — it’s possible no one is going to see me at all. I do my best to avoid letting anyone witness what’s left of me on days like that. It’s not pretty. In fact, according to the small handful of people who have been there to see it, it can be downright terrifying.

Don’t worry. Be happy.

But I don’t think anyone should worry on my account. Truly. Because don’t forget: No matter how poorly I am feeling today, there’s a 50/50 chance that tomorrow, I’m going to be feeling just fine.

 

 

 

 

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Filed under Articles, Chronic migraine, Essays, headache, healing, Migraine

A new word enters the lexicon

Look. If Lewis Carroll (the author of the famous Alice in Wonderland books) could invent words such as chortle, galumphing and jabberwocky–words that have now become part of standard everyday usage–then I want my chance at immortality as well.

In that spirit, I offer the following term that evolved naturally out of a conversation with a female friend who is encountering some difficulty in making herself understood. Her opponent in this instance is a particularly implacable and arrogant male authority figure, but in truth this word has many useful applications and could work in any number of contexts.

Here, then, is the new coinage.

Ma-tron-ize |ˈmātrəˌnīz, ˈma-|

verb [requires an obj.]; feminine form of patronize, only better

  1. to treat with an exaggerated kindness that betrays a feeling of superiority
  2. to speak slowly, carefully and in very simple language when conversing with a complete and utter moron
  3. to accomplish the above with queenly dignity, grace and majesty

There’s my contribution to the English language. Long may it live.

Just remember you read it here first.

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