A woman gets on the bus and sits next to me, then pulls a small, open package of Fig Newtons out of her pleather purse. The man across from her looks up from his phone and stares at the woman's cookies.
Man: how many you got in there?
Woman: Just one. (looks down at the package) They've only been in there a week.
Man: Can I have some?
Me: (Side-eyeing this business.)
The woman starts to hand him part of a cookie when he raises his hand to ward her off. "Don't eat that, there's blood."
She wipes it off and hands it back. "That's just from my hand." He nods, satisfied with this answer, and pinches off a small piece of cookie and pops it in his mouth.
An elderly man seated nearby moans and scratches at his arms. We're almost to the stop for the methadone clinic. We all side-eye him as he reaches into his pants, then coughs violently. Small flecks of phlegm dot the window. The man goes back to looking at his phone, slowly chewing, and I remember my earplugs for mornings on the back of the 150.
When I run at night, I always run faster, footfalls paired with glances over my shoulder, shuddering as I pass through shadows and under the highway. I didn't always fear night running, but several years ago my cavalier sense of safety was forced out of me, and the young man who did it was named Jason.
When Jason called me late that night, I had already been asleep for several hours and could barely focus on his voice. He was at a party down the road, he said. He didn't want to bike home this late, his lights needed new batteries. Sure, sure, I said, I wouldn't want to bike home this late. I unlocked the front door and headed back to bed, assured that he would lock it behind him when he came in.
What happened that night is still a blur, a blur partially imposed by my deep desire to forget. What I do remember is the smell of his breath as he climbed on top of me, breath like straight whiskey. I remember pushing him off of me, telling him to stop, go to sleep, wrestling against him as he tugged at my clothes. I remember thinking, "My roommates are going to hear. What will they think?" And I remember him holding down my arms as I tried to push against him, until I finally thought, "He's too strong. If I don't give in it'll be worse later. If I don't give in I'm going to be raped." And so I let go.
I remember getting up later to shower, numb and in pain. When I came back to my room, he was gone, the sole remnant of the night a text that he had sent on his way home. "Sorry. I wasn't a good friend last night." I remember sitting on my bed, staring at my phone until it rang, my father on the other end letting me know that my dog, Toy, had just passed away. I called the organization I was supposed to volunteer with that morning to let them know the news, that I needed some time to process my pup's death. What I didn't tell them was that I couldn't sit on a bike seat for the 1.5 hour ride, that my head was clouded from what had happened to me in the dark silence of my room that night.
"If I had been any younger that would have left me terrified," I thought. "He's lucky he didn't try that on someone his own age. I'm old enough to handle it. I'm strong." I rationalized myself into acceptance, this man 10 years younger who had overpowered me like I was a child. Eventually I began to wipe it out of my mind, and his presence slowly faded both from my daily life and memory.
Eight months later I got an email from him begging for help. "I've been accused of raping two women on campus! The university is threatening to kick me out of my house! Can I please come over and talk to you? I need a friend right now." I sat at my computer, stunned. He had done it. Again. To younger women. And now he was turning to me for help.
"You realize you raped me too, right?" I finally answered. It was the first time that I'd said that word in relation to what had happened between us, and I felt gutted by it.
"I wish you had told me that sooner," was all he could say, and he disappeared from my life as quickly as he had appeared. After that single confrontation, I thought that he was finally, completely gone.
Except that he wasn't. He was still in my body, in the form of terror that could burst out at any moment: Riding the bus, running at night, walking my dog. Walking Gumbo became a performance of body memory, as he tugged at his leash to run after some squirrel or skateboarder passing by, overpowering me and often knocking me to the ground. That sense of helplessness, of shear panic at being overwhelmed by the strength of this other being, the inability to control what was happening to me, would leave me shaking and in tears on the ground, stammering apologies and trying desperately to hold it together until I could get Gumbo back to the house.
When my good friend told me that she'd been raped, I knew exactly who had done it. Hers had happened about a year before mine, and I sat on a park bench on a sunny afternoon, the screams of children playing nearby piercing the caverns in our conversation, and I hugged her and cried and wondered who else had been hurt, and why I had thought that I was strong back when he'd held me down and forced me to let go of my will to fight back. Holding my friend, I wanted to fight again, but I couldn't face him. And so we sit with this secret between us, this shame for not being strong enough--then, and now.
And like so many rape victims before me, I just want to forget.
It's hard for many of us to understand the forced silence and shame that women feel around rape (and here I am talking solely of women in the United States, because each country has its own reasons behind sexual assault and the culture of silence, countries united by their commonality: complacency with violence against women.) And within the United States, each woman (and yes, men, too) faces her own intersectionality of secrecy, compounded by her racial/ethnic identity, religious beliefs, sexual orientation, and on and on. Yet I believe we do share a larger, US culture that at once expects purity and reservation, while also demanding that we look and act pleasing, that we give just enough, but within limits that morph with the eyes of our male beholder.
"You'd look prettier if you smile," I'm told, again and again as I quietly wait for the bus or scurry past the cafe downtown or simply sit on the park bench on a sun-streaming afternoon, weary from medication and late night homework.
"Come over here and talk to me, beautiful."
"Yeah, you fucking slut, you dyke, keep walking then!"
"Dress like a boy, don't want this dick?"
"Short little dress on, you know you want this."
"Bitch, look at me!"
"Stuck up cunt."
"Just give me a hug and I'll let you go."
"You're not that pretty."
"Fat bitch, nobody would fuck you anyway."
And that's just a walk through the park. Women are bombarded with messages their whole lives about what they can do, say, wear, and the punishment for transgressing these amorphous boundaries of acceptability is all too often violence. And so we internalize this shame, and we begin to doubt ourselves, and we begin to think that yes, perhaps I did deserve this, perhaps I did bring this on myself, because (my shorts were too short I was out at night I let him in I thought we were just friends I thought he loved me I didn't say hi I said hi too soon Why wasn't I smiling He's my husband Why did I drink I shouldn't have gone with him I shouldn't have gotten on that elevator alone Be more aware Be more vigilant Friendzone Don't lead him on Walk in pairs Don't wear headphones Nobody will believe me...) And we find ourselves trying to protect everyone but ourselves from the truth of what had happened (He'll be angry with me I deserved it I'm going to make people uncomfortable if I talk about it They shouldn't have to listen...)
And so they get away with it, and we hug on park benches and hope these tremors in our bodies will disappear.
Most undetected rapists go on to rape 6 times. The average age of a rapist is 31. Mine was barely in his 20's. I know of 4 of his victims. Who will the other two be? Why couldn't I name what had happened to me in time to prevent it from happening to someone else? Why can I still not talk about that night? Why does this stigma prevent me from telling others "I am a survivor?" But instead of being able to talk about what happened, we sit in our rooms, typing on our computers late into the night, isolated and filled with self-doubt, never able to comfortably name our trauma out loud.
I think it's time we start talking about it.
(Please join me in the comments section with your stories, testaments, and thoughts. You are welcome to leave them anonymously if you want to share your story but are not at the stage where you are comfortable publicly claiming it. We are all in different stages of our journey.)
"I believe in a woman's right to control her own destiny, but contraception deserves honest and thorough treatment; it cannot be an excuse for bad science."
- Judith Weisz, Chair of the FDA Board of Inquiry and Professor and Head of the Department of Obstetrics and Gynecology, Pennsylvania State University Medical Center.
The discovery of Depo-Provera as a contraceptive began, like many children or scientific discoveries, with an accident--an accident which continues to affect millions of women today.
In the early 1960's, Upjohn received FDA approval to use Depo-Provera to treat endometriosis and spontaneous abortion (approval that was later overturned), when a scientist accidentally discovered that Depo was an effective, long-term form of birth control. Upjohn began lobbying the FDA to approve Depo for use as a contraceptive, and in 1974, that approval was finally granted.
That approval lasted for 2 months. When animal testing revealed an increase in endometrial cancer among rhesus monkeys and beagles injected with Depo-Provera -- tumors that grew in response to Depo doses -- the FDA yanked its approval and rejected subsequent appeals for almost 20 more years.
During this time, Upjohn was conducting dozens of studies in (mostly developing) countries, as well as a large clinical trial (primarily among African American women who were low income) in Georgia. This study, called the Grady Trial, was widely criticized, citing subjects who were uninformed of the risks of the study -- or who had never given consent to be injected -- and the disproportionate number of poor women of color who were targeted for the federally-funded research. Forced sterilizations were once so common among these women that they had coined a term for the practice, "Mississippi Appendectomy"; this mentality was indicative of a strong movement that drove the approval of Depo Provera, and continues to drive its spread across the globe: Population Control.
Population control advocates were a strong push behind the eventual FDA approval of Depo as a contraceptive in 1994. Despite few long-term studies and growing complaints of side effects beyond those few that had been tightly controlled and studied during clinical trials (weight gain, breast cancer risk, and bone mineral density loss being those most commonly cited), Depo continues to be pushed primarily on women of color and the poor.
I'm a month and a half late for my birth control shot, and accidentally making babies is heavy on my mind. I'm spotting and crampy, though for some reason my breathing has become a bit easier in the past two weeks. I've been frantically searching the internet to find out whether my level of panic is on par with the level of risk that my birth control is no longer functioning. "Please oh please oh please no babies no babies no babies..." I was thinking as I skim the first few websites.
Planned Parenthood gives me this chipper information: "Safe! Effective! Lasts three months!"
WebMD tells me: "99% effective!" (Yay!) But they add in this piece of information that gives me pause:
Don't use if you have:
Unexplained vaginal bleeding
Liver disease
Breast cancer
Blood clots
"Hmm..." I think, pondering why this medication may make these conditions appear or worsen.
And then, several links down, I come across this warning for the first time:
WARNING
LOSS OF BONE MINERAL DENSITY
Women who use Depo-Provera Contraceptive Injection may lose significant bone mineral density. Bone loss is greater with increasing duration of use and may not be completely reversible... Depo-Provera Contraceptive Injection should not be used longer than 2 years unless other birth control methods are considered inadequate.
I'd been on it for almost 4.
Know what else causes bone loss? Menopause. Which is a lot like being on Depo...
When I finally got in to see my new doc, I asked him about this, and he assured me I'd be fine. "Take your calcium, you're not at risk," he said as he grabbed an assistant to give me my shot.
Oh, okay. Of course. I will be the magical exception, I believed. I pulled down my pants, relaxed my butt, and took that shot in my ass for what would be the upending, final shot of my life.
I run my race that weekend. I cough and hack and pout and hug my boyfriend and make it through that beautiful, lung-breaking run, and spend the rest of the weekend doped up on antihistamines.
A few days later, my guy starts to put all the clues together.
August 12, 2013
"Honey, come here! Look at this chart! I think I know what's wrong with you!"
It's 1:00 am, and my beloved is steadfastly researching what has been keeping me in bed the past few days, wrestling with my collapsing lungs, hives, and bewildering insomnia. I crawl out of bed and into the living room, where, on the screen on my love's computer, I see a chart of every single symptom I have been experiencing for the past few years, one piled on top of the other as time passed.
"Jesus!" I try to scream, but my throat is too swollen shut for anything more than raspy squeaking. "It's me, it's all me!"
"Honey, I think you have histamine intolerance."
"Yeah, but... why?"
A couple of days later, Jeff has my answer.
August 15, 2013
"Honey, when did you start your birth control?"
"My Depo? Pffft, pshht, there's no connection there. This started way before my Depo."
"Oh, hmm, okay, well, it may contribute because there's something here about a connection between estrogen and histamine and it could be key to your cause."
I guffawed a few more times, and then after several more sleepless nights, foodless days, and near-breakdowns at work, I start to wonder if my memory isn't quite serving me right. Thanks to the fact that the past few years of my life are fully documented on Facebook, email, blogs, Twitter, and various other online services, I start to piece the timeline of my cough together. And I suddenly realize, "Holy SHIT. He's RIGHT!" My cough had started within days of my Depo, but because of an inconveniently timed broken rib, I'd never made the connection.
And I'd just had my damn shot.
Fall, 2013
My brain has fallen apart. Between coughing and a new histamine-related side effect, insomnia, and the anti-histamines I'm taking to counteract the coughing and GI issues and endless symptoms, I come to work seeming, at best, gassy and somewhat drunk; at worse, suffering from sudden early-onset dementia.
"I swear I'm not drunk," I keep telling my new boss, praying that her alternative conclusion isn't that I'm simply kind of dumb. I'm working in Chinatown and have thus far avoided eating during the entirety of the work day. The one time I break down and get lunch, my throat, lungs, lips, and tongue swell up so badly that I almost stop breathing.
That night I direct the Children's Autumn Moon Festival, whispering to my volunteers across the shrieks of screaming, blissful children. Thanks to the last-minute, machine-like support of my amazing co-workers, the festival goes off without (many noticeable) issues, but I'm physically drained and sleep for most of the next few days.
According to the National Institute of Health, the half-life for Depo Provera is 50 days, with a peak of 3 weeks and exponentially decreasing until being undetectable after about 200 days. I begin my countdown to freedom.
My release date from my body is early March, 2014.
Winter, 2014
Miraculously, my healing seems to be on track. My symptoms are getting less intense as time goes by, though I still have a hard time breathing when I walk, and my lungs often sing to me in a soft whistle as I sit at my computer and type. I'm still exhausted, feel bloated and dizzy after meals, have days, weeks, where it's hard to concentrate, but the full-fledged anaphylactic reactions are ebbing. My research has turned up a lot of connections between histamine and Depo, and I suspect that my endocrine system has been shot from years of hormonal suppression from my birth control.
My new gynecologist, or as I like to call her, My Hero, agrees with my Depo-Histamine theory, and I could kiss her lovely, fashionably bespectacled face for 1.) listening to me without visible judgement, and 2.) verifying that all of the connections I've made are completely plausible.
"Depo is my last choice for birth control, ever. There are horrible side effects." You can say that again, lady doctor.
Getting my endocrine system back on track is going to be a much longer and messier bodily-prison sentence, entirely.
*If you have had side effects from Depo, or have successfully come off of it and want to give me some pointers, I'd love to hear from you in the comments. Support from others who've gone through this (and the support of my guy) help get me through this.
Today was a hard day. In fact, this week has been a hard day, full of disappointment in myself, in this body that continues to revolt against me.
I sat on the couch after work, coughing and wallowing in self-pity, having waved my partner out the door for his run, and I scrolled through and "liked" post after post on Facebook of all of my amazing friends' recent athletic achievements.
Yesterday I walked three blocks. And was immobilized by coughing half a dozen times.
2014 in 2014. *sigh* You'd think I would have learned now about setting achievable goals, but I guess I kept stupidly hoping that the higher the goal I set, the faster my body would decide to heal. My body has its own plans, though.
The First Round of Fantasy Goal Setting:
In my last ever social work class this past quarter, one of our exercises was to work with a Health Buddy and name some health goals for the quarter and help each other work through them. Here were mine:
Walk Gumbo five times per week.
Lift weights three times per week.
Stop beating myself up.
...WHAT WAS I THIIIIIIIINKING?
Within the first couple of weeks, my list was slightly altered:
Walk Gumbo five times per week if I don't feel like puking.
Lift weights three times per week Move weights to a less visible area of the room.
Stop beating myself up. Fail, beat up, repeat.
Then Gumbo and I had a momentous walk.
I was having a particularly hard time that quarter health-wise, and had already pinned my issues on histamine. One of the keys to histamine healthiness is NEVER EATING LEFTOVERS.
I freaking love leftovers. And also broccoli.
One day, starving and ready to head out the door, I thought, Ah, what the hell, these broccolis weren't cooked more than three hours ago and they look so damn tasty! They are only broccoli. What could go wrong?
So I chomp on some steamed broccoli and strap my pup into his harness and not one mile from the house I am PLOWED with histamine. WHAM!!
It was all I could do to hold on to Gumbo's leash (he is not a small mammal, and walking him can take both Herculean strength and unparalleled patience) and stumble across the street to the park to sit down. Intense nausea coupled with shaky, numb legs leveled me for a few moments while Gumbo yanked and whined and licked my sweating, hyperventilating face.
I finally succeeded in standing, if for no other reason than that I had no Option B for getting home, and forced myself to continue my walk. By then, the cognitive effects had started to roll through like Seattle fog, with what I like to call The Hista-Meanies.
So FUCKING Pissed and I don't know whyyyyyy!!
We managed to make it home, and I realized that I had severely underestimated my illness and overestimated my capacity to deal with it, and if I wanted to make it through the quarter I had better scale back my goals to something that made me less likely to curl up next to the couch and cry.
That's when I came across Virginia Woolf's "On Being Ill":
"In illness words seem to possess a mystic quality. We grasp what is beyond their surface meaning, gather instinctively this, that, and the other,-- a sound a color, a stress, a pause which the poet, knowing words to be meagre in comparison with ideas, has strewn about his page to evoke, when collected, a state of mind which is not in one word or one sentence, nor can the reason explain it. Incomprehensibility has an enormous power over us, more legitimately perhaps than the upright will allow. In health, meaning has encroached upon sound. Our intelligence domineers over our senses. But in illness, with the police off duty, we creep beneath some obscure poem by Mallarme or Donne, some phrase in Latin or Greek, and the words give out their scent, and ripple like leaves, and chequer us with light and shadow, and then at last if we grasp the meaning it is all the richer for having traveled slowly up with all the bloom upon its wings." -- Virginia Woolf, "On Being Ill"
...and I started thinking about my own illness narrative, the meaning that I had ascribed to my demon. A friend, aware of my health struggles and dealing with her own, reached out to tell me "...as it feels like the bandwidth of your life narrows there is also the opportunity to acquire a new depth of sorts." So I thought about Virginia, and these nights crying on the couch because I failed to meet my running goals again this week, and the simple joy I once got from running, and writing, and just being... ...and I decided to check out. I said my goodbyes to my various running pages, enlisted the Hurrahs of some loving and supportive friends, and decided that I need to stop forcing things and just let my body be. Accepting limitations is extremely challenging. Those with chronic illness often find the need to separate their “true self” and their “medical self," to tell the stories of Who They Were in relation to Who They Appear To Be Now. I recognize that separation in myself, this existential crisis stirred by my sudden stumble into the realm of the unwell, and this dissociation is inhibiting my healing. I've decided to use my writing, and literature, to begin to shift my perspective on illness and, well, not accept my condition, but look at it from another perspective, like “sticks on the stream… irresponsible and disinterested, and able, perhaps for the first time in years, to look round, to look up,—to look at the sky, for example.”
I'll still be running, don't get me wrong, but there are infinitely more, subtler, and gentler things that I can do to engage with (or disengage from) the world and this weird, Depo-riddled body that I call home.
I'm going to go lay down and count my pup's whiskers. (If you have advice, favorite readings, or just want to share your story of coping with chronic pain, please feel free to share with me in the comments section. I don't want to simply create a running monologue. I want to create a community.)
One Day I'll figure out how to draw and edit pictures online. For now, words and old photos will have to suffice.
I have been sitting on the couch for the past hour, eyes half-closed, my arms drooping heavy at my sides, wishing for some magic rush of energy that no amount of coffee could possibly supply. I've been on heavy amounts of Bendryl and anti-histamines since last night, and still couldn't breathe or sleep until early this morning. Last night The Cough was a seismic sort of coughing that rumbled and echoed through my chest. How can two small lungs possibly make that much sound? Gumbo wandered out around 2:00 to keep me company, gently resting his bony chin on my cheek.
When I woke up at noon, I felt useless. Heavy with antihistamines and still heaving, I managed to shower and even put on a bra, a pretense to accomplishment. Of course, I paired Success with once-baggy running pants, a small step above wearing pajamas out of the house.
"Haha! I have put on a bra! I will take on the world!
And I have also put on these old wedgie-inducing running pants! I will take on whichever part of the world comes to my house when I am not sleeping or hiding!"
Antihistamines trumped bra for today's level of motivation, and my pup and I watched the hours pass from the confines of the couch. Well, I watched time and he watched me, his face pressed against my laptop keyboard, waiting for signs of life.
"Where's your bone? Get your bone!" I'd muster up the energy to sound enthusiastic, and Gumbo would leap into action, as if to say, "Dear lord, you are RIGHT, I AM missing my bone!" and then pounce across the living room floor to get it.
Gumbo will thrust his ragged, chewed up scrap of bone onto my lap and I hurl it into the kitchen where he scampers off to fetch it.
I was an extreme athlete, and this is what is come down to: Couch Fetch.
While my rib was healing, I would spend hours walking the side-streets of Kalamazoo, reading a book to maximize time and keep me from my other form of self-medicating, alcohol. Soccer, running, swimming, cycling: It all came to a rib-grinding halt. And that was before the cold set in.
It's hard to explain the excruciating and explosive pain that is coughing with a broken rib, and my face was a constant wincing grimace as I skulked the backroads of my neighborhood. Slowly, my rib began to heal and I was finally able to get back into what I loved, but my muscles had atrophied despite my incessant walking, and I had this cough that I couldn't shake.
I pinned the cough on the cold and rib, combined with a Spring of snowy Michigan cycling. By May, when I moved to Seattle, I had gained about 7 pounds despite my incessant activity, and the cough was beginning to take a toll on my running.
August 2010
Mid August, 2:00 am was my first late night coughing fit. Then the fatigue set it, cloudy exhaustion like walking through a dream. Doctor after doctor diagnosed me with asthma, though we couldn't seem to find an inhaler that helped. I was continuing to gain weight, partially explained by my chronic fatigue and stunted running schedule. Cleaning solutions, dust, truck exhaust--everything set me off into a desperate coughing fit. The first time I hiked Mt. Si with my partner, my lungs were seized with overpowering coughing fits, and I was fighting a creeping anxiety attack that now insinuated itself into my growing list of symptoms. Shaking at the top of the mountain, gasping, I tried to hide my tears from my partner.
"When we get down to the bottom of this mountain, you're making an appointment with another pulmonologist." I made that appointment, and my new doctor gave me a battery of lung function tests. After passing each and every test in the 99th percentile for my age, my doctor was flummoxed. That's when I asked about food. I was breaking out in constant hives, and I had a feeling all of my inflammation could be connected.
"You don't think this is all related, do you?" My pulmonologist stared at me, waiting. His question was clearly rhetorical, but to appease me (and get me out of his office) he agreed to refer me to an allergist for testing.
Here's what I found out I was allergic to:
As a lifelong vegetarian living in a temperate climate, I knew that neither of these options were my culprit. "Guess you don't have hives after all," said my pulmonologist the next time I went in.
"But I have one right now, on my arm. It itches like hell!"
"No, you don't have hives. Just a heat allergy."
I raised up my sleeve and pointed at the large welt on my arm. "So what is that?"
He leaned over to look and let out a quick "hmph, huh" before turning back to his paperwork and writing out a prescription for another steroidal inhaler.
Stellar service, man. Thanks for listening.
August 2011
My asthma attacks are almost every other night. Each episode is the same: I go to bed exhausted and quickly fall asleep, only to wake violently an hour later, coughing wildly and clutching at my chest. I feel like I'm drowning. My stomach sucks in as I struggle for breath, and tears stream down my face. "Help me, please" I beg, in my mind, but all I can do is gasp and cough and sob and hope that this time, like the other times, the attack will begin to fade. "Please help."
Each time these attacks happen, my partner runs out to the kitchen to make me Theraflu. Neither of us understands how or why this calms me, but it does, and my partner sits next to me in bed rubbing my chest in small circles, holding me while I flail and heave, trying to keep air in my lungs, gulping Theraflu in between fits of coughing. Eventually the medicine begins to kick in, and the asthmatic fit begins to subside, and I sit hunched over in bed, completely drained, tears sliding down my face as I try to remain as still as possible. Still. Lifeless. Like I have expelled some core of my being and nothing is left but this wet, ragged body.
By now, my partner and I are researching alternative diagnoses during our every spare moment, and we find out that my theory about food intolerances is supported by what little research is out there on this new, contentious topic. I bring up the possibility to my otolaryngologist following my laryngoscopy.
"Well, your throat and esophagus are indeed inflamed. And it's very likely that the hives were your body's initial reaction to something it wasn't processing correctly, and it's turned into a systemic reaction. Actually, food allergies make a lot of sense." I could have kissed her. Woman doctors for the win.
A few days later, my fridge stocked with veggies and juice, I began a strict elimination diet. September, 2011
I've dropped almost all of the weight I'd gained while sick. My asthma is almost gone, and my running pace down to a 7:30. When Jeff and I decide to hike Mt. Rainier, I practically run up the snowfield to the top.
By the end of the diet, I have a few foods that I suspect, but I'm in denial and confused by the fact that my hives never totally went away. I had also started my steroidal inhaler within a few days of my diet, so I can't be sure which solution had caused which change in symptoms. Hoping that the diet had reset my digestive system, I dove back in to the foods that I had craved every moment of the past two months.
Suddenly, my inhaler stopped working.
December 2011
Jeff and I head to Belgium for a quick trip to visit his best friend from Columbia. Land of beer and cheese and delightful little chocolate-dipped cookies with every cup of coffee, Jeff and I spend the first several days immersed in pastries and Trappist beer.
By the end of the trip, I'm desperate for a salad.
When I get back to Seattle, my health plummets. I develop the flu, am covered in full-body hives that whirl together into planets and constellations, am constantly hungry and bloated and dizzy. Fog and fatigue grip my brain so I can't hold a conversation or even complete a sentence, and I suffer panic attacks and anxiety so strong that I have to sleep on the couch, wrapped around my dog. The flu comes with ear
infections and after a month of being ill, I wake up with half of my face drooping and numb.
My pulmonologist gives me a steroidal nasal spray. "You don't have asthma," he conceded, though he would now outright shoot down any suggestion that my onslaught in symptoms could be connected. I try the spray in desperation, but the side effects are too much for me.
March, 2013
I'm desperate, sick, barely functioning. I can't think in class, and my anxiety is accompanied by sudden shifts between depression and irritability. When I come home from school, all I can do is gulp down some Theraflu and fall into bed.
That's when I meet Dr. Deichert, a naturopath at Swedish Hospital, and he convinces me to try another, stricter, clinician-supervised Elimination Diet. I'm not thrilled at the idea; the last time I did this diet I went through severe withdrawal from sugar and bread products, and was miserable and hungry--if finally thin and active again. But I dive back in, and begin to tune in to each shift in my body and mood. The cough disappears, my mind and mood level out and clarify, and I'm once again hopeful, so hopeful, that I'm back to my old self again.
Then I add in wheat.
WORLD OF PAIN! The effects are extreme: Nausea/motion sickness, migraines, fog brain, GI issues. Asthma attacks followed by hives. I take wheat back out and everything clears up again.
Sweet merciful shit. I'm a fad allergy. I'm Gluten Intolerant.
I'm also in full-fledged denial, so I continue to test and re-test wheat. At
first, my symptoms always come in a particular order and within 3 days of wheat ingestion. I finally stop wheat all together, and the longer I'm off, the quicker and stronger my reaction becomes. By the end of the year, my reactions are immediate, and my Pavlovian Instinct kicks in. I no longer crave anything made with wheat, because all I associate it with is intense, week-long pain.
The hives are still there, spotting my arms now and again, and the cough lingers and slows me down, but I can run, and I can think, and I can sleep through the night, and I feel happy. Dear lord I feel happy.
Fuck gluten. I'll take Happy, please.
Summer, 2013
Something has changed... I'm not just reacting again, but now I'm hit straight
in the gut. I'm cold all the time. I seem to cough every time I eat, and am developing new hives, blistered hives that itch and burn, rising across the tops of my fingers and back. I'm exhausted, yet my heart races at night, and I'm averaging about 4 hours of sleep each night. At the same time, my usually low blood pressure is now unusually low, causing nurses to pause and retest each time I go in for a check-up. I faint easily. The symptoms seem to abate for about a month, but I'm so busy worrying about being pregnant that I barely take notice.
I had missed my birth control shot.
A month and a half late, I finally get my Depo shot and head out to Twisp three days later to run Angel's Staircase with my man. I was anxious but hopeful -- my training hadn't gone well but the past couple weeks I'd been feeling a little better.
It was a beautiful, painful, 7 hour coughing fit.
Beauty.
Pain.
I was on antihistamines for the rest of the weekend, trying to keep my coughing fits at bay. It was like I'd walked right up into those clouds and never came down.
I began having anaphylactic reactions to everything I ate. My throat would swell shut, my eyes itched, my lips and tongue would swell up so much it alarmed my classmates. I started getting debilitating migraines, and my nausea was so severe that I was afraid I'd barf every time I got on the bus to go to work. All of the previous symptoms were there, too. They were unremitting, and I began to fear food, going the entire day without eating until I was safely home with my antihistamines, my boyfriend, and my bed. Then Jeff finally put everything together: My symptoms, the progression, the sudden new onslaught, the Theraflu and antihistamines and elimination diet, the timing when everything had started:
And we had a new, strong suspicion that my birth control had triggered it.
(If you have experience with gluten intolerance, histamine intolerance, chronic pain or birth control side effects, I'd love to hear from you in the comments section. I am here to learn from your journey, as well.)
I fractured my rib in February of 2010. It is a defining moment in my life, not because of the rib itself, but because of what it masked. A couple weeks prior, I had started on Depo Provera, and my health was just beginning to unravel. But this rib, and the cold I maintained for the 6-8 weeks it took to heal, long remained the culprits I pointed to when the cough began, the cough that became this illness of mine so many years later. Though it is nice to remember the passion I had back then for running. Oh, dear passion, please come back soon.
A Memory
Monday night I was recruited to pick up a game for a friend’s indoor soccer team. The last time that I had played with them, I was fasting, and I was a woozy sweaty mess by the time the game was finally over. This time, I was ready to show my, well, not my skill, but my exuberant enthusiasm. I was feeling feisty and ready for a good run around. Imaginary tail wagging wildly, I took my place on the field and got ready for a gosh-darn good run.
That is until about 20 minutes into the game. Ah, solid exhaustion, like no marathon has ever brought upon me. And with no subs for our team, we were getting whomped. When the ball went soaring back down the field toward our goal, I summoned yet another reserve of unknown strength and went flying after it. It was a race with a broad shouldered man several years younger and inches taller than myself, and I was nipping at his heels. That’s when it happened.
I don’t know how it all went down. Arms were interlocked, twisting occured, and suddenly I found myself in the fetal position on the ground cradling my head, my brain thrown into the left half of my skull and settled into permanent residence, and my right breast feeling like it had been crushed back into my chest. I couldn’t see, breathe, or speak for the first minute as I rolled around on the ground, gasping for breath and hoping against all ridiculously tough-girl hope that the tears rimming my eyes would absolutely not pool over and drip down my cheeks in front of this crouching ring of staring men. I finally managed to gasp a lie about being okay and staggered off of the field, alternately clutching my bruised breast and foggy head.
I sat on the sidelines shaking my head, trying to force my brain back in to the other half of my skull, and tried to assess the damage. Can’t breathe – may be from sprinting continuously then getting the bejeezus knocked from my lungs. Can’t see – well, just keep running and that way if it’s a concussion, I won’t fall asleep and die. My team was getting pummeled, so I sloshed my brain around again and forced my wheezing lungs to get back in the game.
Hell, I even scored.
Thing is, I hadn’t fully assessed the damage. Here I was so worried about a possible concussion that I didn’t pay attention to the shortness of breath, the pain in my chest, the inability to contract my lungs without shuddering in pain.
Then I went running.
Oh, my stupidity abounds, friends. After a few belabored miles on Tuesday and 4 painfully slow ones on Wednesday, Thursday morning I woke up to the realization that Something Is Horribly Amiss. Pain and shortness of breath was quickly becoming an inability to breathe beyond a shallow gasp, and every time I moved, I could feel an extremely unsettling grinding/crunching sound coming from underneath my right breast. After checking off ”Heart Attack” and “Aortic Dissection” from “List of Potentially Really Horrible Things Wrong With Me”, I came to option #3: Broken rib. I certainly met the requirements: sudden blow to chest, inability to breathe without excruciating pain, scary grindy noise in rib cage. I prodded along my side until I found the singular source of pain and felt a sudden, astoundingly painful POP underneath my fingertips. Yep. That’d be a broken rib, folks, and I done just finished the job.
Thanks to a final prognosis from my first customer Friday morning, an auspiciously placed and wonderfully patient paramedic who just happened to need some running shoes, I now know that a fractured rib can actually be broken by rapid, full expansion of the lungs (example given: running). Dang. How many times have I sat across from an injured runner, looking to me to tell them “It’s okay to run through the pain,” and sympathetically crushed them as I asserted, “Listen to your body. If you hurt, Don’t Go Out. Rest is the only path to real recovery. Then we can work on prevention.” Ah, the joys of hypocrisy. Now I am staring down the barrel of 6-8 weeks forced rest, had to drop out of the second session of soccer, and can only shallowly, painfully sigh at the irony of it all.
My fellow injured runners, secretly lacing up your shoes, sneaking out of the house to limp out a few miles before your loved ones discover your absence, compounding pain and swallowing pride, jealously staring off the porch at your non-injured, blissful running brethren, my thankfully-only-figuratively-bleeding-heart goes out to you. Come find me for some commiseration. I’ll be the one holding my side and floating around on a cloud of Motrin, keeping my running shoes in check.
It was the beginning of February, 2010, and I really wanted to have sex.
I didn't just want sex with anyone--I had a guy in my eye and knew I'd be getting him in my bed soon, too. He was down; of course he was down. I was 5'10" and 129 pounds, an extreme athlete, always on the move and ready for anything.
"You don't always have to be moving to experience the world, Cass," my ex had once told me, several months before our last kiss goodbye. "Sometimes you see more if you just keep still." (At the time, this was only one of many, many, many lifestyle, temperamental and ideological differences that we had. I needed to be on the move.) I had been single, on and off, for almost a year, and I was ready to take on a new challenge, and his name was Pete.
Pete was everything that I wasn't in February 2010. High income, big house in the suburbs, retirement funds and vacation homes. He was, in essence, stability. He was everything I thought I needed as I wrote through late nights in the attic of a house teeming with chirping mice and drunk 21 year old men.
He was a planner in every way, and that included families. "I don't do condoms," he'd told me. "You better get yourself to a Planned Parenthood if you want us to go any further." I did, and found myself with my buttcheek bared in a Planned Parenthood office several days later, a needle jabbed indelicately into my hip.
"You probably won't have a period," they'd said. "You may gain 5 pounds."
That's all? I was underweight and rarely had regular periods due to how much I ran. Baby vaccines every three months and I didn't have to have a period? I'll take it!
Oh, the world of mistakes I had just unleashed on my unsuspecting body.
Pete was the least of my mistakes -- We didn't get along and outside of a mutual passion for running, we had little in common, though I remain hopeful for his happiness. I moved to Seattle just a couple months later and thought that I'd left all of my mistakes behind me.
Except I kept on keeping on with the Depo.
The side effects were almost immediate, but due to a fractured rib and a cold, I wouldn't pin the side effects to the medication for several years.
There are many reason that I've run throughout the years: Anxiety, depression, bullying, emotional abuse, escape. But during the second half of 2009, I ran because of heartbreak. This is a glimpse of where I was:
A Memory
Okay, I’ll admit it. I was recently dumped. And not in a let-you-down-easy kinda way. I mean I got carelessly tossed out the window and lay broken on the ground before I even knew I was up in the air. Heartbreak shows on a person’s face, and what I’ve realized lately is that those who are suffering the same malady can see it in the eyes of others. There’s a common bond of suffering; the rejection, the anger, the loneliness, the lingering questions and self-doubt. Since the Big Dump of ’09, I’ve been meeting more and more women at the store who are going through the same thing – or worse. Each woman contains at once a shuddering fragility and a prodigious strength that amazes me. Women who once had come to the running store with husbands, boyfriends, fiances, now sit facing me alone on the couch, shoes scattered like irreconcilable lies, and we talk of piecing our lives back together. We laugh: open-mouthed, sarcastic, tacitly understanding, conspiratorial laughs that reach out where hands can’t touch. We speak of equivocating lovers, over-shopping for one, sleeping on sofas, programming remotes, wincing at memories, and the sudden overwhelming need to run as fast as humanly possible. I have always loved to run. Running is my communion, my awakening, my catharsis, my OM. I run to feel free, to feel whole and alive. Lately, I run because I Can’t Not Run. Sometimes I slip up and I let myself think of How Things Were; rainy mornings are given to indulgence. Then the kernel in my stomach flickers and contracts, and I know I need to get outside, find my rhythm and run away the pain. Fast. I tell you what: getting dumped sucks but it sure is great for your PR. My friend (of aforementioned sofa) told me that “Pain stretches the heart to make more room for love.” My heart currently feels like a Roman mausoleum. But this weekend is my first trail marathon of the season, with plans for an ultra in the works. I won’t let my mistakes be my undoing. I’ll be the one laughing at the finish line.
For the New Year I took care of something that should have been removed from my life a long time ago: My toenail. Not the whole thing, mind you, just a wee little slice along the side that had grown down into the flesh my entire life. It now looks like part of my toenail has been splayed open and replaced with raw hamburger. To spare you the sleepless night I had after looking at it yesterday, I've forgone an actual photo and instead made this lovely hamburger toe, shown above. Microsoft Paint for the win.
Though I've been okay'ed to run, I decided it was best to stay off of my feet yesterday, but my hamburger toe came in sync with a downshift in mood, and by today I knew I needed to get out and shake it out.
You see, I kinda got into a Facebook fight and I ended up temporarily losing faith in humanity.
I'm not generally one to go out picking fights with strangers on Facebook, and things started out casually enough. HipHopDx had posted an interview with Lord Jamar, who had said that many white people gravitate toward white rap artists, a historical pattern in the United States (ex: Elvis, Janis Joplin), and that the most successful white rap artists have gotten approval from someone within the black Hip Hop community. Never in the interview did he say that white people could not like, listen to, appreciate, or perform Hip Hop and rap. What he did say is that it's important to acknowledge where the music originates, since it has its roots in the marginalization and oppression of African Americans, a condition which persists to this day.
Many of the comments from white contributors quickly became hostile. "You people are racists!" claimed one in an ironic statement. "Why the fuck is skin color still a discussion to this day you ignorant bastards?" screamed another in what I can only assume was also unintended irony. But the worst was a man named Adam. *sigh* "For the above 'woman', you get no response because you're blatantly racist."
There was so much misogyny, racism, and ignorance wrapped up in this one (excerpt of a much worse) comment that I had to jump in to this woman's defense. He questioned a (black) woman's sexual identity simply because he disagreed with her opinion (he didn't do this either with black men or white women with whom he was arguing), then called her racist (a word which implies not just bias, but socially-sanctioned, structural power differentials, and structural power is definitely not something that African American and minority women have in the U.S.), and refused to address her (again, power structure. He could simply refuse to engage with her and therein deny her a voice.)
That kinda thing gets me mad. Like, real worked up. And one of my 2014 goals was to be more compassionate in the way that I talk and have dialogues about social justice issues.
But damn is race a Hot Topic. And it's really, really hard to talk about when so many have never had to give it much thought. I mean, I know. I've been there. I'm white.
I watched this guy's comments get "like" after "like" and was left seething, and finally deflated. If this is what it's like for me to try and have conversations about race, what must it be like for Women of Color who face this silencing and anger and discrimination every day? A friend wrote on my timeline during the discussion:
"(Discussions about race) can get pretty scary. Especially when it comes to hip hop music. The article mentioned nothing about whites not being welcomed into hip hop (WE LOVE YOU GUYS!), but mention the fact that we're not going to let you just take shit like Elvis did, and then all of a sudden white kids see racism. Its so frustrating."
I can pull out of those conversations, or ignore them, or just go shake it out. They don't play out every day of my life. And that thought simply overwhelms me.
So for two days I sunk into despondency. I finally ran and wrote it out earlier this evening, and can finally think about my so-called Internet Fight without grinding my teeth. But it reminds me how much, how very much, I need to keep trying to talk to people about Race and Structural Oppression in the United States, and how very painful those conversations are going to remain, and privileged, how very privileged, I am to be able to escape to the trail and shut it all out.
I have made a home for myself in solitude, yet find myself lately wishing for the company of my friends. The people that I trained to run years back have now all left me trailing behind -- or, more often, sitting at home, coughing and muttering excuses, knowing that I could never keep up. And in losing pace with their training, I've begun to lose pace with their friendships, as well. My partner always falls into step with me, often running small circles around me as I clutch my lower back and heave with coughs, gasping that I'll be ready again soon. Lately, I've just gone out on my own rather than see him worry over what we both know will eventually pass.
But this is the Pacific Northwest in January. It's pitch black by 4:30, and I live in a small, impoverished city on the outer limits of Seattle. I'm no longer fast, my breathing often rattling in my chest, which leaves me feeling afraid and vulnerable, wheezing down the dark, empty trails at night. It's a 45 minute bus ride/walk to see even my closest friends, which is a far distance to go for someone with chronic fatigue and a necessary "Seize the Moment" approach to running.
I've put a lot of thought over the past year into the accessibility of running, as in WHO has access. An acquaintance - young, Caucasian, able-bodied doctor who lives in the more affluent area of Seattle - once wrote a post on Facebook explaining his frustrations with races. "Why do you need to get a shirt and a medal?" he complained. "Everyone should be able to run 26 miles. It's not that hard. It's not a huge accomplishment. It just means that you did the bare minimum to be able keep moving."
My first thought reading that was, "You and I are living in different worlds, son." His comment was ableist and put no thought into the differences of access to space for people living in lower income areas.
I look, on the outside, like I am fully able-bodied, as does my brother. To someone like this man, we would appear to be able to run 26 miles -- that is, if we were willing. But bodies hide pain well, and we live in a society that expects Hopeful Answers and Stories of Triumph. Those who live in the realm of the unwell face pressure to ignore or look beyond their bodies and then can feel shame when they're unable to deliver society's Narrative of Optimism. For me, that shame is compounded by the fact that, at one time, 26 miles WAS easy.
At the same time, many people live in areas where distance running simply is not safe. I can run approximately 4 miles through my tiny neighborhood before needing to branch off onto unlit streets without sidewalks, a thoroughfare dotted with prostitutes and gang activity, or a surprise enclave of over 100 registered sex offenders tightly bunched near the Department of Homeland Security office and our local elementary school. And by comparison, this is a pretty safe neighborhood with a Planning Department and City Council who have put a lot of thought and intentionality into how built environment affects health.
So to avoid being Bare Minimum Doctor or Fit Mom, think about what really shapes your experience, and how that experience may be different for someone else.
My partner and I welcomed in the New Year with what should have been a short and easy 5 mile run. I started coughing before both feet had a chance to hit the ground. By the second mile I was feverish and clutching my back.
I had just finished my post about New Year's Hope, and I was already fighting back tears with each gasp.
My partner checked on me before I waved him on -- I wanted him to be able to finish what I couldn't, and needed a moment to gather in my frustration. A few minutes later I saw him gracefully trotting back, so I cleared my throat and turned back with him.
1.5 miles from our home, as my lungs and IT band were jockeying for position for first body part to give out in 2014, the sky filled with them: Crows. It was difficult to acknowledge the stark contrast of this moment from that evening exactly four years ago: That lonely and hope-filled woman from 2009, and this broken body years on, my fingers pressed into the palm of my beloved. "They're cheering you on, you know," Jeff told me, and he smiled the smile that I wanted to feel, and with that simple gesture I could.
"It was a bad lung day. They're going to happen." Jeff rubbed my chest as I bent over the side of the trail, nodding, clinging to his words, his hand, and a vision of thousands of crows, returned to cheer me on.
