Silence Equals Death: Why Women MUST Speak Out About Illness by @VABVOX

The mantra of AIDS activists in that period of the late 1980s into the 1990s was simple as it was graphic: Silence = Death.

Government officials refused to talk about HIV/AIDS, either at the federal level or the municipal level. I covered one demonstration outside the White House where AIDS activists kept chanting “say it, say it!” because then-President Ronald Reagan had refused to even say the word “AIDS,” even though his close friend, actor Rock Hudson, had become the first celebrity known to have died of the disease a few years earlier.

Those years imprinted me as a journalist. That era, when it seemed like so many young men–men my own age or only a decade or so older–were dying in the streets, was fraught with urgent activism. I lost so many writer friends in those years that I stopped going to funerals because I couldn’t bear the pain. When my paternal grandmother died, I spoke at her funeral and said how grateful I was to be speaking at the funeral of someone who had lived a full life, into her 80s. Who hadn’t been snatched away, tragically, mysteriously, in her 20s, 30s, or 40s.

Silence = Death.

That never left me.

In the 1990s, I became an advocate for lesbians with cancer. An epidemic of dying was happening and no one was paying attention, because no one paid attention to what killed women.

One in 250 Americans was being diagnosed with HIV/AIDS and it was a news story every day. One in eight women was being diagnosed with breast cancer–which wasn’t even the leading cause of cancer deaths among women then or now–and it was never mentioned unless someone famous said they had it. But even that wasn’t a thing yet.

I had been diagnosed with breast cancer at 26 and had had a recurrence before I was 30–replete with reconstructive surgery of my right breast. I felt connected to those gay men dying, because I knew first hand what it was to think life was spreading out before you like a wildly beautiful and delicious buffet, only to have someone tie the black ribbon of death on your door.

Being threatened with death galvanizes you.

Forever.

I have never stopped talking, talking, talking about the illnesses–cancer and auto-immune diseases–that impact women. The things that kill us are kept from us. We are told in doctor’s offices that we are depressed, anxious, tired, hormonal–many things that might also be true about ourselves, but which are not what is actually making us feel sick.

We are told that women go to the doctor for “no reason” or “just to talk,” like our lives are vast empty spaces which demand time-fillers. We are told that we ask for “unnecessary tests,” when we actually just know something is not right in our own bodies–bodies we have had to be in touch with since the first time we saw the red splotch of blood on our panties and our girl world changed forever.

We are lied to as women patients. We are given drugs every day that have never been tested on us. We are told to watch out for heart disease–the leading killer of all women everywhere–but we are not told that the symptoms will be vastly different for us than for men. We are told that we are more prone to auto-immune diseases like multiple sclerosis, lupus and myasthenia gravis, but when we see doctors with our recurring, mysterious symptoms, we are often given an anti-depressant and told we will be feeling better in a few weeks.

I have been fortunate over the past 15 years. I have vetted doctors for my health care and found the best. A lesbian primary care physician who listens to her female patients. A male cardiologist who is only a few years older than I and who is top in his field and warm, friendly and yes, listens to his patients. A pulmonologist who is gruff and has no filter, but cuts right to the issues at hand.

But even this terrific coterie of doctors who I know I can trust and depend on cannot contravene the literal centuries of medicine and science that has put men first and women dead last–and often dead.

To be fair, of course, doctors can’t help prescribing drugs never tested on women. Nor can doctors be blamed for not knowing what isn’t being written about in science journals or medical annals. If no one cares enough to compile the data that show  women are more prone to certain illnesses than men, how can doctors treat us effectively? It’s only been the past decade that data have shown, for example, that women are more likely to die of a first heart attack than men, because they present with different symptoms and are frequently turned away from emergency rooms as having a panic attack instead of a heart attack. Yet even knowing this data now, it continues to happen.

And then there’s what happened to me.

On May 15 I woke up feeling a little sick. My wife teaches and had one of the many colds that are an ongoing issue in a K through 12 environment. I had just been to the doctor the day before because of a pain in my right leg that was determined to be a pinched nerve, since it generally got better with walking.

I worked through the day, because Fridays are big deadline days for me, despite an increasing tightness in my chest and shortness of breath. I was diagnosed with COPD (chronic obstructive pulmonary disease) six years ago, when one of my lungs collapsed. I’d had chronic uncontrolled asthma since childhood–likely a gift of living in a large polluted city and having two parents who were chain smokers. I have never smoked, but now have the disease that killed both my parents, my mother at only 67.

As the evening wore on, I had done twice as many lung treatments as usual, but was still gasping. And now my heart rate was way up. I rang the doctor on call at my doctor’s practice and he said, “You can’t even get three words out without gasping. Get to the emergency room, now.”

I still didn’t realize I was dying. I have had pneumonia several times in the past decade and a COPD crisis feels a lot like what was happening to me. I assumed I would go to the emergency room, a doctor would hook me up to IV steroids and hospital-grade oxygen and I would be home by morning.

I wasn’t released from the hospital until May 30. I nearly died three times in the 15 days (an unheard of time to be hospitalized in the U.S.) I was in ICU and isolation.

What was wrong?

A young, fresh, concerned emergency room doctor who listened to my lungs and only heard one working, sent me for an expensive and unusual nuclear medicine isotope test after he saw something odd on the standard chest X-ray. This required a special technician who had to come in from home, as the test is only done during normal business hours. And there was only one vial left of the radioactive material I had to breathe into my lungs. And–unbeknownst to me–a clock was ticking. I was dying.

I’d had a pulmonary embolism. Something that I’d vaguely known about from spy novels and from the years when I was commuting from one part of the U.S. to another via airplane and flying to the UK every few weeks. You got pulmonary emboli from sitting on long flights or from Russian spies shooting a syringe full of air into you as you walked across a bridge in some Eastern European country.

You didn’t get them from sitting for long hours at your computer writing your next book on the erasure of lesbians.

Yet that’s how I got mine.

That pain in my leg was a DVT–deep vein thrombosis. And when my leg suddenly felt better and the pain was gone–that’s when I started to die. Because the blood clot in my leg that showed no symptoms whatsoever except that gnawing pain, had taken a trip to my left lung where it was killing me.

It’s just over three weeks since this happened to me. I was immediately put on blood thinners to prevent a second clot, which was essential, as my pulmonologist said in his characteristically unfiltered way, “If the first one doesn’t kill you, the second one will.”

The blood thinner they put me on was a small red pill. A new treatment which was meant to be easier than older, more established ones. I’d seen ads for it on TV. Ads with three men of different ages–an older man, a middle-aged man and a young man–all celebrities–who were taking the drug.

No women in the ad.

The little red pill nearly killed me. Because it has never been tested in women.

When my female doctor saved my life a second time, I was put on intramuscular shots to my stomach twice a day. The injection is huge and I dread it. But the side effects, while unpleasant, are bearable. And won’t, hopefully, kill me.

My time in hospital was terrible. I had superb care–wonderful nurses, a supportive partner who slept on a cot in my room every night, a hospital physician who was both a superb doctor and also co-ordinating with my own doctors and who made it her personal mission to save my life.

When I wasn’t delirious with fever or in a fetal position from pain or projectile vomiting blood from the little red pill that had never been tested on women, one of the nurses had connected my tablet to the hospital guest wifi, so that I could have half-hour stints of connecting with the outside world.  Reading the New York Times and the Guardian and the New Statesman. Seeing what my feminist friends were up to on Twitter. Connecting with the world–my world, the real world–that seemed further and further away from me.

When I learned I would be released the next day, I was ecstatic. I shared the news on Twitter with the women (and some men) who had been cheering me on and giving me their love and support and generally making the most hellish time of my life more bearable.

And then one woman peripherally from that set of women started attacking me. “So you’re not dying then? Oh.” “Not too sick to tweet, huh?” “Faker.”“Liar.” “Too bad you didn’t die. We’d all be free of your me, me, me, blah, blah, blah.”

Did she think all those pics from my hospital room were photoshopped? And more importantly, why was a woman trying to silence another woman?

Silence = Death.

I did what I always do with abusers on Twitter. I retweeted the abusive tweets, reported the sender for harassment and abuse and blocked her. I asked others to do the same as I would with any MRA. Some did, others did not.

The incident was frankly harrowing–much more so because it was a woman, a woman I didn’t know, but one who friends of mine claimed to know. A woman behaving like any MRA or UKIPer or BNPer. It was shocking.

Here I had nearly died and had been sharing what happened to me to alert other women to the dangers and this abusive person was targeting me (with nearly 20 tweets) and targeting other people who demanded she stop.

This is why women are silent about pain and suffering and health crises that could kill us. Because we are expected to be the carers, but never allowed to be the cared-for. This is why there are no articles or studies or data or news stories on things that kill women every day. Because we are silenced to death.

We must stop participating in our own deaths.

I watched my late friend Lisa Bonchek Adams chart her final illness–metastatic breast cancer–on Twitter. Every scan, every treatment, every good day or bad day, the ways she was leaving a legacy for her children–she tweeted all of it out there. It was harrowing and it was illuminating and dear lord, was it inspiring.

Yet Adams regularly got the treatment I received last week–but from many people, not just one sociopathic outlier. Adams was called names and told to shut up and had a couple of vile pieces written about her that were eventually taken down from the mainstream newspapers in which they appeared. She was called selfish and self-absorbed and morbid.

Yet all many of us had ever seen in those tweets was her bravery and courage and modeling for the rest of us, should the same awful disease befall us.

Adams, who died in March after a valiant and very public battle with her disease, was used, even in her obituaries,  as an example of why women should not over-share about their illnesses.

Why?

I wish all the women who have told me in the past three weeks about women in their families who have died from pulmonary emboli had had their stories chronicled so I might have been warned that I was at risk. One woman told me that not one but three women in her immediate family had died of pulmonary embolism. Another particularly heartbreaking story a young woman shared with me a few days ago, was about her own mother who had a stroke as a result of a pulmonary embolism at 28–the cause was contraceptives. She is now nearly that age herself and wonders about the woman her mother was pre-stroke. She mourns the loss of the mother who she knows from other people was “never the same.”

More than a half million people get a pulmonary embolism every year in the U.S., but most consider that number vastly under-reported. Of that half million, 100,000 will die in the first 48 hours, as I almost did. Of those deaths, nearly 80 percent are women.

In the U.K., which has better reporting due to the NHS, one in 1,000 people will get a DVT and if untreated, one in ten will develop a PE. Thousands die, mostly women.

I knew about the risk of the long flight and sitting in the same position on an airplane. But I never thought about the same number of hours sitting cross-legged on the bed with my laptop, doing research, writing, doing more research, more writing.

Women are most likely to remain sitting at a desk working for long stretches with no movement. You must walk five minutes out of every 60. Do it. As the noted breast cancer specialist Dr. Susan Love told me in an interview last year, “sitting is the new smoking.”

If only I had listened.

There are many other risk factors for women:

Pregnancy and childbirth.

Contraception.

Hormone Replacement Therapy (HRT).

Obesity.

Immobility.

Smoking.

Young women on birth control pills who also smoke are at increasingly high risk. Middle-aged women on HRT for menopausal symptoms–a walking (or sitting) time bomb. Women who are chasing the corporate ladder. Students who have to get that paper done now.

You. Can. Die.

I’ve been home from hospital for a week, now. I am hooked up to oxygen, the long green cord hissing through my house, attached to a loud, churning generator in my kitchen. I have to do eight breathing treatments a day and use a spirometer ten times an hour to exercise my lungs. I have to administer a shot to my stomach twice a day. I have three other pills I must take. All of this will go on for months, maybe years, maybe for the rest of my life.

I am exhausted, although I am breathing better. Pure oxygen gives you strange dreams, though.

I bleed very easily now. When I brush my teeth, when I blow my nose, when I sneeze. My period is due this week and my doctor told me to “prepare for a flood.” I am dreading it.

The Twitter abuser who accused me of talking about myself was right–this column is mostly about me. But this is about me and about you. I would have liked to have read this column six months ago when I was working 18 hour stretches at the computer finishing one book and midway through another and filing seven columns a week. I would have done pretty much anything to know I was at risk for something that has so totally derailed my life and which will end up costing me–since the U.S. has the most expensive medical care in the world–about $100,000. The shots alone are $1,000 a piece–less with my health insurance, but still. Who has that kind of money?

And I am not safe. I am not home free. I have dodged a few bullets, but no one will tell me that I will definitely survive this.

Silence = Death.

We repeated it endlessly in the late 1980s and through the 1990s. But it was a chant for gay men and their supporters. Women never embraced it as their own.

We must. We must talk and talk and talk some more about our health and our mothers’ health and our daughters’ health and our sisters’ health. We must talk as white, black, Asian, Latino, Indigenous, heterosexual, bisexual and lesbian women. We must talk, talk, talk and ignore the crazy haters who tell us no one wants to hear what we have to say.

We must talk about our losses and our survival.

But we must remember that Silence = Death, and if it’s not our own death, it will be that of another woman. Another woman we might have saved if we had just opened our mouths to speak.

 

Victoria A. Brownworth is an award-winning journalist, editor and writer and the author and editor of nearly 30 books. She has won the NLGJA and the Society of Professional Journalists awards, the Lambda Literary Award and has been nominated for the Pulitzer Prize. She won the 2013 SPJ Award for Enterprise Reporting in May 2014. She is a regular contributor to The Advocate and SheWired, a blogger for Huffington Post and A Room of Her Own, a columnist and contributing editor for Curve magazine and Lambda Literary Review and a columnist for San Francisco Bay Area Reporter. Her reporting and commentary have appeared in the New York Times, Village Voice, Baltimore Sun, Los Angeles Times, Boston Globe, Philadelphia Inquirer, The Nation, Ms Magazine and Slate. Her book, From Where We Sit: Black Writers Write Black Youth won the 2012 Moonbeam Award for cultural & historical fiction. Her new novel, Ordinary Mayhem, won the IPPY Award for fiction on May 1, 2015. @VABVOX