Maybe when we’re at Mom and Dad’s place for Christmas, I can walk to Joe’s Pizza & Pasta.
The biggest change in me since starting the iron supplements about a week ago has been my ability to see a different kind of future for myself. For several months, my health has done nothing but decline. No “remissions” or “good days” or even good moments.
I’d moved way beyond things like not being able to mow the lawn or drive my car and entered a very scary new place where inhaling was just this side of impossible. I struggled to sit up in bed, fell when I tried to walk. I stopped using my walking cane because I didn’t have the strength to hold on.
I could feel my system shutting down every time I ate or drank anything. My body was telling the rest of me, “Fine, we’ll try to deal with this food, but you should know that means you can do nothing else.” Eventually, I could sense my gut was just completely paralyzed. But not eating hardly seemed like a solution.
I was perpetually hungry, and I was perpetually unable to process what I ate.
For weeks I’d been asking myself questions like…
Am I dying?
How will Dan deal with the mortgage, taxes, utilities, food expenses if I am not here?
Where would I want him to spread my ashes?
Should I try to get more life insurance?
If all of this seems over the top and a little melodramatic to you, I assure you it is only because you have not been living inside this body of mine.
“I don’t know how to explain this,” I said to Dan this morning, “but I feel like I’m getting myself back.”
Dan didn’t say much, he just let me continue with what has recently become my morning iron supplement report.
I have to talk about what’s happening right now. I’m excited and overcome with joy. Sharing is an impulse, like raising your hands in the air and closing your eyes to see if the Holy Spirit is as tangible as you think it might be.
“Every piece of me—my legs, arms, skin, bowels, mind—all of it felt disconnected by the pain and the fog. They weren’t parts of a whole me, they were all just these separate burdens I was forced to drag around. No escape, no peace. Not ever.
“But last night there was no burning sensation in my legs or feet, and I woke up this morning knowing that I had slept.”
All day yesterday my stomach creaked and groaned, making the kinds of noises you’d expect to hear in an old house with radiant heat that’s starting up for the first time in about a decade.
Tick tick tick tick.
I looked down at my food baby, conceived from a modest lunch, and smiled.
See you ’round, fucker.
Joe’s Pizza and Pasta is four-tenths of a mile from my parents’ house. It’s a favorite for Mom, Dad, Dan and me. In fact, Mom and Dad are regulars there because it’s so close and the pizza is so good. The waitress sometimes puts in their order when she sees them pull into the parking lot.
Ten days ago, I wouldn’t have let myself even dream about walking to the restaurant for the holiday pilgrimage.
When I got the results back from my iron blood test a while back, the doctor told me that I was within in normal range, though on the lower end of the spectrum.
8.0 – 388.0 ng/mL
50 – 170 mcg/dL
200.0 – 360.0 mg/dL
T.IRON BINDING CAP
250 – 400 mcg/dL
15 – 50 %
However, she also said that many of my symptoms, including the crazy burning pain sensations and involuntary flailing of my legs (RLS) seemed to indicate I was deficient. So despite low but normal results, her recommendation was this:
I can’t remember how old I was at the time—second, maybe third grade? We were in music class, huddled around a tape recorder. We were going to sing some shit, and then we were going to listen to ourselves singing said shit.
(Mrs. S might not have explained it in those exact terms.)
But first, she needed a volunteer to do a little voice-over announcing that we were from Mrs. W’s class and were going to be singing “This Land is Your Land.” (Or maybe some other song. The title is not the part burned in my memory, the next thing I tell you is.)
Eight kids—at least—raised their hands so high their little butts came out of kumbaya formation as they pleaded to be picked to do the voice-over intro. Not me, though. I had a tape recorder at home, and I already knew that whatever was played back on that cassette would not sound like me. It would sound stupid.
No way, man.
I emphatically dropped both of my hands into the songbook sitting in my lap and pushed my lips together between my teeth.Looking around at my enthusiastic classmates, I comforted myself. At least you won’t have to do this thing.
Of course, I only drew more attention to myself. A wry smile spread across my music teacher’s lips and her eyes narrowed. “Emily.” Her curled finger ordered me to come to the center of the circle so I could speak into the recorder’s microphone.
I didn’t have the vocabulary for it at the time, but if I knew then what I know now, my inner voice would have been shouting sonofabitch! as I crawled closer to the recorder.
Back in November, I mentioned that I went to our local public radio station to record an interview for a show called The Pulse that airs on Philadelphia’s WHYY. Today, that piece was broadcast, and the reporter sent me an email with the link to listen.
It took me a while to muster the courage to play it.
The ten-minute episode includes interviews from a few other chronic illness patients, so the portion of audio that actually includes me speaking is pretty small. I knew this would be the case, but I did not expect that confronting it this morning would make me cry.
Essentially, three hours of exhausting work (showering, dressing, speaking, walking from the car to the studio and from the studio back to the car) required so many spoons that it left me physically drained and flaring for three days. All of that effort was reduced to a couple of three-second clips of me talking, vaguely and weakly.
Like I said, I knew all of this was in my future when I agreed to do the interview. But today it was all right there in my face, and I was forced to see this project the way I see just about everything else I do in life.
A whole lot of suffering and struggle to do a thing. And the best possible payoff I can expect for doing that thing? Maybe some cans end up in the recycle bin that my husband didn’t have to put there. Maybe a shrug of indifference for something I wrote. Maybe I get a couple of Facebook likes.
I don’t want my walking across the living room floor to be the equivalent of someone else’s climbing Everest. But some days it totally is, just minus any of the fame and fanfare.
“You guys! I fucking showered today!”
Dan and I listened together as the reporter talked about how my illness had affected the sound of my voice.
“You were just nervous,” Dan said.
Yeah, but no. Nervous me doesn’t sound like that. Sick, dehydrated, weak, defeated, wracked-with-pain me sounds like that. Liquid started pooling in my eyeballs.
“Aww, don’t cry. You did good, kid!”
I’ve never been particularly good at speaking. I own that 100%. Writing comes to me more naturally, and it more closely represents what I’m thinking, who I am. It’s the only thing about me that I feel hasn’t diminished in some way following the onset of my chronic illness. (Well, I’m not as prolific, but I mean that I feel like the quality of my writing is still there.)
But I can’t write all the time, and in my day-to-day dealings my voice betrays me. I’m self-conscious about it. People hear my voice on a typical day and I imagine they think I’m timid. Quiet. Weak. Unsure.
I’m none of those things, but am often powerless to convey that to others. Especially people who never knew me before or never really knew me well.
I frequently get talked over in meetings. Even when I have the ability to raise my voice to be heard, I usually don’t. I make a mental note to make my case by email or I just let it go.
That’s because everything in my life is consequential. The more energy I devote to talking louder, being insistent, yelling? The less energy I have to walk down the hallway to my home office, brush my teeth, or read a book.
Sometimes by dinner on a work day I’m so weak my muscles are like, “This again? Do we have to lift the fork to your mouth?” And literally all I’ve done is talk to a few people on the phone and write a few thousand words at my desk.
So, as you may expect after reading all of this, I run a cost-benefit analysis on every tedious, motherfucking thing I have to do. Most of the time my brain crunches the numbers and spits out a response. It’s on dot-matrix receipt tape, and it commonly reads: NOT WORTH THE EFFORT.
When things are really bad, the response is: BITCH, PLEASE.
For the WHYY interview, I did the calculations and decided that it would be a worthwhile thing to do. But listening to it play, well it just felt like wasted effort.
The episode moved on to the next interview.
None of this is what I wanted people to know about me or about living with fibromyalgia. I do not feel accomplished or content or satisfied in any way.
“This land was made for you and me.”
Mrs. S stopped the recording and rewound the tape, trying to find the beginning of our recording among dozens of other classes singing the same song.
“This is Mrs. W’s class singing ‘This Land is Your Land’ on April 28, 1987.”
My cheeks flushed with embarrassment at the sound of my voice being played back to me. I looked at my classmates, expecting giggling and pointing fingers. But they all just stared at the black plastic box in the center of the circle. One boy clapped twice and squirmed, unable to resist outwardly expressing his excitement.
I don’t know. I guess the moral of the story is that even weak voices can be useful? Whether it’s helping my music teacher find the right spot on a Memorex cassette or reminding me how much more ‘me’ I am when I write.
I still have a shit-ton of stuff to share, and at least one decent way of putting it out there.
I had a fibro flare (or something) the week before Thanksgiving. Then on the Tuesday before Thanksgiving, I fell. I smacked the back of my head on the hardwood floor in the bedroom and landed rather spectacularly on my left elbow.
Then on the Friday after Thanksgiving I had a mild fever and was achy all over. Today, I have a sore throat, plugged ears, a runny and sneezy nose, and continued aches in addition to my usual chronic pain.
I’m grumpy, but Boomer seems to feel sorry for me and has taken to snuggling me more than usual.
While my parents were here for the holiday, my mom helped by shopping for and assembling our pre-lit Christmas tree. We also have fake candles in our front windows, and snowmen on top of our upright piano. It’s a cozy time to feel sick, at least. There’s more decorating that could be done, but will only happen if I’m feeling up to it. Fingers crossed.
I didn’t live with my parents for my senior year of high school. My dad changed jobs during some kind of personnel restructuring or something at his employer, and my parents moved to a different state. Being filled with love and mercy, my folks opted not to rip me from my hometown and instead worked it out that I would live with family friends to finish my last year of high school.
Thanks to time and brain fog, a lot of my life between 1997 and 1998 is blurry. An acquaintance or classmate might come to mind, but I will probably only recall a face and first name while straining for a last name or another important detail. Said detail will simply burrow deeper into the recesses of my mind until I’m angry and frustrated at my inability to recall stuff I thought would be accessible for my whole life (or at least another 30 years).
One thing I do remember from this era of my life, however, is a tiny bit of a conversation between my mother and her best friend, the woman who let me stay with her. Being church friends, the conversation had major religious themes. This woman said to my mother, “…and then it hit me. ‘Ye have not because ye ask not.'”
The fall after my graduation, I enrolled at the University of Evansville as a physical therapy major. And, much to everyone’s surprise, I dropped out of college a couple of weeks after I started. (And by “dropped out” I mean I just quit attending classes.) I was miserable and not really sure why until the Dixie Chicks’ “Wide Open Spaces” started playing pretty much everywhere. I felt that shit in my soul.
I struggled with some guilt for a while, until I realized that quitting was the first time I’d done anything for myself. I felt I’d let others down; I did not, however, feel I’d let myself down.
Too bad I wasn’t able to express that at the time, but hindsight amirite?
I was squirming on the inside, trying not to be a total flake while acknowledging that things were different now. I was different.
Fast forward to 2006, another memory I recall, but this one in vivid detail.
I was 26 and working at a public elementary school in an economically depressed area of Indianapolis. The students were hungry and edgy, the parents were pissy, and one teacher in particular had a perpetual burr up her butt.
On the preceding day, one of Mrs. W’s students had missed class and didn’t get his report card. She was going to leave it in the office to be picked up, and she wondered in my direction if it should be put in a sealed envelope.
“Yeah, that’s probably best,” I replied while trying to enter a new registrant in the system, answering the phone, and fixing a small redheaded girl’s broken glasses for the sixth time that day.
After a few moments I looked up to find Mrs. W still standing in front of me. Lips pursed, left hand out, right hand on her hip. With the phone receiver wedged between my head and my shoulder, I did my best to shrug my confusion.
“The envelope.” She didn’t even bother to mouth it silently as I spoke with a parent on the other end of the line.
I glared, put the kid’s glasses down, and rolled my chair back to where the manila envelopes were lying on the counter. She could have easily taken five steps to get one her goddamned self, but she didn’t. The phone cord just barely reached. I rolled back and put the envelope in her hand, but instead of a thank you I got a smirk and an eye roll.
I screamed all the way up I-465 and across Crawfordsville Road on my way home.
“WHY DIDN’T YOU FUCKING ASK, YOU MISERABLE SLUG?”
“WHY DON’T YOU TRY ‘PLEASE’ AND ‘THANK YOU’?”
“I HOPE YOUR FIFTH GRADERS NAIL YOU WITH A POISONED BLOW DART TOMORROW!!!”
Where was I going with this story? Oh, yes. That was the day I decided I needed a college degree.
But not one in physical therapy. English would do nicely.
I needed money for college too, so I applied for a full-tuition scholarship at the same time I submitted my admission application to IUPUI. If I was selected for the Sam Masarachia program, I’d be required to maintain a certain GPA and participate in social organizing classes and events.
Okay, I thought, deal.
That’s when I found out I could write. The scholarship committee called me in for an interview, and a few of them (there were like 12 people grilling me!) mentioned the strength of my essay. I don’t remember much of what I wrote, except that my final line was something like, “If you don’t award me this scholarship, I will still get my degree—it’s just going to take me a lot longer.”
Well, they awarded me one of those Sam Masarachia scholarships, and over the next three years, I read Saul Alinsky. I interned at Jobs with Justice and Indiana Women Work. I marched with janitors in downtown Indy while white men in expensive coats came out of buildings and glowered at me and my comrades. We chanted “si se puede” and banged on five-gallon buckets and marched in circles with our signs.
I was fucking hooked. And I found out most shitty things stayed the same because people with power didn’t know they were problematic. (Okay, some of them knew and didn’t give a flying fig as long as no one challenged them.)
So when you mash up “ye have not, because ye ask not” and “yes, we can” you get an activist for life. And when that activist gets fibromyalgia and runs into dismissive doctors, a broken healthcare system, fibro-deniers, and ignorance…
…she says, “Fine. I know what I need to do.”
This post is part of the Health Activist Writers Month Challenge (#HAWMC). If you want to learn more about the 30-day writer’s challenge or sign up, you can do that here.
Prompt 7: Tell us how you chose to start advocating for your condition.