When I worked for John Green in the aughts, a concept in one of his books really hit me, and nearly twenty years later, I am still thinking about it. The basic concept is that people need good mirrors.
When Pedro the PT showed up for my in-home physical therapy, I think the reason I held him in such high esteem is that he was a really good mirror, but he was only into reflecting the good stuff.
He’d smile a lot, celebrate my wins with me, and tell me humorous stories. And somewhere along the way, I realized I don’t suck, I’m not a burden, and my broken body is not me. I am not this brain tumor.
For the first time in quite a while someone was mirroring the good parts of me.
This was so refreshing and uplifting to me, but anxious thoughts took notice.
“Seems like she’s doing better. That’s not normal. We should probably pull the panic alarm.”
In-home therapy concluded, and I started outpatient therapy where I’d be forced to acknowledge I needed help from Dan, who I didn’t want help from.
I spiraled again, worrying that I wouldn’t be successful at PT without Pedro. Then chastising myself for wanting to keep the training wheels on. “You have to do this yourself eventually,” I’d say. “Insurance won’t care what you need.”
I intended it to be a self-pep talk, but instead it was anxiety fodder. I doubted my ability to keep going, and the part of my lizard brain that fears being abandoned and alone took over frequently.
Nothing makes me a worrywart like thinking my only future is being a long-term energy suck on everyone around me.
So I’ve been trying to “be the change,” as much as I bristle at the oversimplifying of everything.
Mirror, mirror on the wall Who’s the kindest one of all
“I’m starving,” Rodney complained. “How long can one pizza take?” He angrily punched buttons on the TV remote and stopped flipping channels when he found a rerun of Seinfeld. It was the episode where Kramer tries to operate his own movie phone service. When Kramer got to the line, “Why don’t you just tell me the name of the movie you’ve selected?” I giggled despite being hangry myself.
I looked over at Rodney, for a second expecting to share a moment of laughter, but he was not moved. He’d been home from work for at least an hour, but there he sat. Still in his starched and ironed work clothes; he hadn’t even taken his shoes off yet. “Why don’t you ever laugh at anything?” I blurted. He laughed at that, sort of, and told me that of course he laughed. Then he asked me why I never noticed.
My stomach growled. To distract myself from the discomfort. I made myself busy grabbing paper plates, napkins, and a couple of sodas from the kitchen so that when the pizza finally did arrive, we could just dive right in. “You know what I hate about this condo?” I said, laying the plates and things on the oak dining room table my parents handed down to us. “No one can ever find it! God help us if we ever need the fire department or something.”
I think the city planners or whoever assigned house numbers to Indianapolis land parcels in 1986 skipped the class—preschool I think it’s called—where you learn how to count. Our unit was 6838 Eagle Creek Path. The unit next to us was 6900, and the unit across from us was 6904. Unit 6837 was down the street tucked away in a cul-de-sac. That was definitely not how numbers were supposed to work, and it made it impossible for anyone to find us. If a delivery driver did end up at our front door, the encounter always went the same way.
“Sorry it took so long. The house numbers out here don’t make any sense.”
“Yeah,” I’d say, “the guys numbering these condos must’ve been smoking something really good.”
Or sometimes the drivers would give up before making it to our driveway and call me from halfway down the block. “Uh, yeah, hi. This is your Donato’s driver. I’m standing here in front of 6837, and…where are you exactly?” When that happened, I’d put on my coat and shoes and head outside. I’d walk to the end of the driveway near a row of mailboxes and give an exaggerated wave in the direction of the only car on the block sporting a light-up roof sign.
“See me now?” I’d say into my cell phone.
The car would roll up, and the window would roll down. “Sorry for the wait,” he’d say handing me the box through the open window. I’d tip him a few extra singles for his trouble and walk wistfully back into the house with my sad, cold pizza.
They never read the delivery instructions on the order. And they never called for help at the first sign of trouble. They always thought they could figure it out on their own if they just tried hard enough. But by the time the pizza finally reached us, the cheese had the texture of a vinyl record left too long in the sun and the pepperoni grease had returned to it’s blaze-orange solid form.
That’s exactly what happened the night of February 2, 2006.
I set the cardboard box down on the dining room table. The smell of tomato and garlic raised Rodney from the couch. He grabbed a plate and a couple of slices. “Finally,” he muttered, shooting me a look. He had a way of making me feel like every inconvenience was my fault. If I hadn’t been so hungry myself, I might have pointed out that he was the genius who insisted on buying the place. Instead, I took a huge bite of my pizza. It was, of course, awful.
Rodney’s phone rang mid-chew and he took it off his belt clip to read the caller ID. “It’s Dad.” He flipped open the phone and answered, “Hey, can I call you back in a few minutes? I’m literally just sitting—” He stared down at his plate. Every muscle in his body tensed, constricting his grip on the phone. The hard plastic shell creaked under the pressure.
“What?” Rodney asked. I heard the voice on the other end of the line repeat something, but I couldn’t make out the words. It sounded bad. Rodney didn’t say anything but “OK” for the rest of the short conversation.
“OK.”
…
“OK.”
…
“OK.”
Then he flipped the phone closed.
“Mom hung herself.” His voice was flat. His face was blank.
I wasn’t terribly fond of Ruth. I mean, as mother-in-laws go, she was fine. But we weren’t what you’d call close. When Rodney and I were first dating, I presumed Ruth and I had trouble warming up to each other because she and Ed lived eleven hours away in Myrtle Beach. It’s hard to get to know someone you never see, right? But when she told us she and Ed weren’t coming to our wedding in 2004 (we had a modest ceremony and reception a few months after we eloped) the distance between the two of us became insurmountable. It had nothing to do with where either of us lived.
“What mother doesn’t come to her own son’s wedding?” I asked Rodney one day. “What father doesn’t move heaven and earth to make sure his wife is sitting in the front row?” I wasn’t mad, I was baffled. I pressed him for details. “What exactly did she say?” Rodney explained she was self-conscious about her psoriasis, as if that made all the sense in the world. “And that means your dad can’t come either?” I asked. “Christ that’s weird.”
But back to February 2, 2006. As soon as those words—mom hung herself—crossed Rodney’s lips, I burst into tears. Sorrow consumed me so wholly and with such intensity that I began to shake and my lips turned purple. It should have been empathy for Rodney’s loss that broke my heart. It wasn’t. I studied Rodney. He was holding himself together really well, looking at me like my inability to contain my emotions was the real tragedy. It was a little scary, truth be told. But I convinced myself that he’d crack when reality finally sunk in.
I didn’t stop crying until the next morning when Rodney and I met his sister Jennifer and brother-in-law Michael at the airport. I was dehydrated from sobbing all night, hungry because we’d abandoned the pizza on the dining room table after the phone call, and exhausted from getting no sleep. The four of us waited in silence to board a plane to South Carolina. I watched a man in a wrinkled suit shout into his Bluetooth headset while a pre-recorded message about loading and unloading zones played too loudly over the public address.
I wondered if the man in the suit had ever thought about killing himself.
Ed’s neighbor picked us up at Myrtle Beach International in Ruth’s van. Seeing the beige Grand Caravan pull up to the curb without Ruth inside, Jennifer said, “This is surreal.”
The house was abuzz with people I’d never seen before, mostly Ruth’s friends from church. Well, they could have been friends with Ed too, but I’d always just assumed he didn’t have any. The women swarmed around Ed, a gruff man with thinning brown hair that was going gray, a large red nose, and a beer belly. He was sitting at the kitchen table, head bowed and resting in his left hand.
A plump woman in her mid-fifties had positioned herself between the living room and kitchen and was deftly directing people carrying deli trays, vegetable trays, dessert platters, and loaves of bread. “Those should go in the fridge for now,” she said to a young woman balancing a plate of fresh fruit in one hand and leading a kindergartner forward with the other. The woman in charge turned to the four of us. Resting a hand on my shoulder and bending slightly to look me in the eye she asked, “Can I help you find something?”
“Uh, we’re the kids?” I pointed to Rodney and Jennifer. “I mean, these are Ruth’s children. And this is Michael, Jennifer’s husband. I’m Emily.”
“Oh!” her eyes widened, and her jaw fell as understanding washed over her face in a wave. She pulled me in, hugging me tightly. The first hug I’d witnessed or taken part in since the news. Yeah, I thought to myself, hugging. That’s what normal people do when someone dies.
“I’m so sorry honey.” She squeezed a little tighter for a second. She was warm and her embrace was a salve. She smelled like vanilla sugar, like the inside of the cookie jar at my grandma’s house. I inhaled the comfort deeply—like a junkie unsure when or where I’d find my next fix.
The woman let go of me and moved down the line to squeeze the others.
“Mabel?” I interrupted her as she threw her arms around a visibly uncomfortable Rodney.
“She’s in the back room, dear.”
I slipped away from the crowd to check on Ruth’s mom.
A few months earlier, the elderly Mabel and her second husband James (her first husband had shot himself decades ago) had moved to Myrtle Beach to live with Ruth and Ed. James passed away shortly after their relocation to the East Coast. So Mabel had her own room on the first floor of Ruth and Ed’s four-bedroom cottage style home. Modestly furnished with two twin beds, two nightstands, and a small TV, the room was sparsely decorated in neutral colors. As if everyone knew it wouldn’t be occupied long. There was a faded La-Z-Boy by the window. Mabel was sitting quietly in the chair. The door was open, so I knocked on the door frame.
“Hi, Mabel.”
“Hi, hon.” She offered me a weak smile and smoothed the blanket on her lap with arthritic fingers. Mabel was a slender woman in her early eighties. Her sweet, grandmotherly features were topped with a dollop of silvery hair. Her bun reminded me of the Pentecostal women I’d see at the grocery store back home in Indiana, but I was pretty sure Mabel was Methodist. She looked good, considering. Her skin was smooth and plump, and her gray eyes were warm and vibrant. Not red and sunken like I had expected.
“How are you? Are you OK? Can I get you anything?” I asked, motioning to the empty glass sitting on the nightstand.
“Maybe a glass of water.”
“Nothing to eat?” I prodded.
She shook her head no. I returned from the kitchen with a glass of tap water and small plate of fruit and cheese for myself. Pointing a thumb toward the kitchen I said, “The women from the church are saying goodbye. I heard them in the kitchen just now. We’re going to the coroner’s as soon as everyone leaves.” Rodney and Jennifer had decided they needed some closure, and services wouldn’t be for a few days because the local funeral home had to prepare and ship the body. Ruth would be returning back home to Indiana. “Are you coming with us?”
“Oh no,” Mabel said. Her gaze dropped to her knees. “I’m going to wait here for Cora Mae. She’s on her way from Kentucky.” Mabel pointed toward a suitcase on the other side of the bed.
“Oh,” I muttered. “Oh! You’re going to live with your sister then?” It took me a moment to understand what she was implying.
Mabel nodded and picked up her glass to take a drink. She used two hands to hold it, because her crippled fingers wouldn’t bend around the cup.
The chatter picked up out in the living room as the screen door screeched open and closed repeatedly. The church ladies were leaving. Ed walked past Mabel’s bedroom, and I overheard him say to Michael, “That woman hasn’t done a goddamn thing for herself since she got here. She won’t even pour her own cup of coffee!”
Christ, I thought, I guess the church ladies tucked Mabel back here for safe keeping.
In the minivan on the way to the morgue, Ed placed the blame for Ruth’s death squarely on Mabel’s frail shoulders. “Your daughter doesn’t come downstairs all day and you don’t once think to check on her?” his voice boomed in the close quarters of the vehicle. Ed had found Ruth’s body the evening before, when he came home from work. The house was quiet and dinner was noticeably not waiting for him, so he went upstairs to see what was wrong. When Ruth wouldn’t open the door, he beat it down.
It made sense that Ed was angry and looking for somewhere to place the blame, but the tragedy was hardly the fault of an eighty-two year old woman who couldn’t climb the stairs. In the back seat of the van, I sat quietly, pulling my arms and legs in closer to my body. I pressed my palms together and squeezed my folded hands between my knees, making a little more room for Ed’s rage. Ridiculously, I hoped that if I made my body small enough, he’d shut up.
Outside the morgue, Ed lit up a cigarette and gestured for us to go on ahead. He wasn’t going in. He’d already confronted that reality and there wasn’t any reason to make himself do it again. Rodney, Jennifer, Michael and I went inside. We said our quiet goodbyes to Ruth, not daring to hover too close to her too still body. The fluorescent bulbs hummed overhead, their light joining forces with the mint green tiles to cast an unnatural glow over the room. It was chilly, even though we still had our coats, hats, and scarves on.
Jennifer was first to break the silence. “Why would she…” Instead of finishing the thought, she sniffled and dabbed her eyes with a Kleenex. We were in there for two minutes tops, but it felt like eons. Sure that we weren’t just living in a nightmare, we shuffled toward to the door.
“You guys go ahead,” Rodney said. “I need a minute.”
It wasn’t long, just a few minutes maybe, when Rodney joined us in the parking lot. “I couldn’t cry,” he whispered to me as the others climbed back into the van.
“That’s alright,” I said. “Not everyone does. Grief is weird.”
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Though they’re sometimes ridiculed on the Internet, I’m about to buy my first pair of Crocs.
My AFO is not meant to be worn without shoes, and I don’t have what I need. Right now I have a pair of Skechers slip-ons, but they’re too tight for me to get on easily over the brace. The top of the shoe has no give, and it’s nearly impossible to get a braced foot in there without help.
Fun as it is pretending I’m Cinderella going to the ball, I kind of hate needing more help. I think I’ve already established my desire for more independence, not less.
When I picked up the AFO, Bob recommended something like the hands free, Slip-in Skechers, because they self-adjust with elastic bands across the top. But they (like most things disabled people need) are expensive, and I am unsure they’ll work. So I just can’t pull the trigger.
However, for about half the price, I can try some Crocs. (Walmart has them 40% off right now, and I have an affiliate link there too ) They’re still one solid piece across the top, but with the heel strap and a hair dryer to heat and custom form the plastic a little, I think I have a chance at making them work for me.
The bottom of the AFO is as smooth as the rest, so I have to keep myself steady while my brain learns to adjust to a different gait. It’s super easy to fall or trigger a panic attack or both until then.
I can slip on a grppy yoga sock, but then the sock grabs the floor and stays put while the orthotic slides around inside it.
Most of the time, I feel like I’m learning to walk again. Sometimes I take the AFO off, walk to my destination, and put it back on. I still get the benefit of 90-degree flexion that way, but it doesn’t really help me walk more—the ultimate goal here.
So I’ve noodled out something to try. Keep your fingers crossed for me, and I’ll post an update after I’ve had enough time to try it out.
I want to give myself a pat on the back for making it to physical therapy Wednesday. I didn’t want to go. In fact, I was ready to cancel again. I did my outpatient PT out of stubbornness, but I was plenty anxious about it.
Mostly anxiety strikes when I think about getting in the car and leaving the house. It’s a production centering on me, and I hate that I feel like I have no control over how much it’s going to suck.
That plus worrying what I’ll do to stress and strain everyone in the vicinity is just too much. I can’t worry about everyone else, and yet I can’t not worry about everyone else.
So I get overwhelmed and the panic sets in. My brain and muscles quit communicating. I grip the Rollator brakes while trying to walk forward. I literally fight myself and collapse with the exhaustion of it all.
Let me back up a little though.
Tuesday was another trip to the dentist, and after two fillings and giving Dan a piece of my mind, I had one heckin’ doozy of a panic attack. The drill squealing in my ears and rattling everything in my head put me on every edge imaginable, and I was already convinced Dan was just going to dissociate permanently.
I was not in a sustainable headspace.
Dan had said he’d read my previous blog—the one where I wrote about our conversation—but that didn’t silence his provoked demons, so I dove in again.
“If I have something to say to you that you’re not going to like, do you want me to say it to your face or do you want it in an email?” It was a genuine question. I didn’t know the answer, and I was too tired to assume.
He chose me swearing at him to his face. I obliged.
I told him he was being passive-aggressive, and that I was honking steamed that he was perpetuallly mad at me for apologizing excessively when all I wanted to do was make his life as my caregiver easier.
For example, I was suggesting different ways to help me from shower to bed and wondering about his arthritis when he said sharply, “Stop worrying about me.”
The “Take care of your own shit,” wasn’t explicitly stated, but it was definitely implied. It hurt and pissed me off. I felt like he was determined to be mad at me for ev-uh-ree-thing, and when I feel I’m being unfairly blamed the blamer is gonna hear about it. I promise.
Between my in-person tirade and the blog post and then the subskeets on Bluesky, I think I got his attention. He was patient-er with me than I was with myself at therapy.
When Mom asked me how PT went, and I said, “Ehh, okay.” Dan told her not to let me lie and said I did really great.”
Shoot. It. In. My. Veins.
He said sweet things to me and about me, and I told him it didn’t hurt when he touched me.
(It literally physically hurt when he brushed up against me I was so overwhelmed and overstimulated. I never knew what was going on though. I thought I was just broken.)
I told him I still think it’s funny when he calls me a dick—just not when I’m being vulnerable about anxiety.
I can work with this. To dig out from under this anxiety rock, I need a sturdier shovel and the dirt to stop multiplying.
Anyway, at PT the therapist was explaining that my brain map was smudged when it came to my right side and that I was okay. And I could feel my lip quivering as I squeaked out airy responses to her questions. I didn’t cry, but I was so damn close.
She asked me if I wanted some tissues for the ride home, and I nodded yes.
There was a friendly patient in the waiting room, though. So when he greeted us with a “good morning” on my way out, I sobered up.
Still no OSHA recordable sob fest. But I’m getting there, and when I do finally ugly cry? I will celebrate.
Earlier this week I picked up my custom ankle foot orthosis (AFO). It’s not miraculously making me walk like I used to because I was bedridden for too long. But it has already made a huge difference in how much less energy I spend trying to get around.
When I had the appointment Wednesday to pick it up and get final adjustments, I did a few steps on the parallel bars at the prosthetics and orthotics place.
I stood up and went right down. My muscles are weak, kids. I didn’t fall because Dan and Bob* were like, “Oh no you don’t.” But darn it if I didn’t try to kiss the floor tiles.
(I’m already really bruised from a fall while brushing my teeth last weekend. Grrrr.)
I want so desperately to take a few steps without a spotter, but I’m not there…YET! I didn’t get this way overnight, and I can’t expect to un-get this way overnight. But damn I want to just take off so bad. I had a dream last night I was walking around like BEFORE, and I exclaimed “Look at me!”
That’s significant because I do not want anyone to look at me.
Bob went to get a gait belt or something and was like “Ope. She’s going,” as I tried to get out of my wheelchair.
To be blunt: I hate my wheelchair. It’s a transport chair, so it’s not meant for long-term sitting, and sitting in it for anything over five minutes is uncomfortable as fuck.
It’s fairly heavy, awkward to push, and confining in a way that restricts my movements. Being in it fuels my anxiety. I just absolutely, positively hate it. Plus, needing someone to load it in the car and push me around doesn’t exactly indulge my mile-wide independent streak.
But even lying in bed with the AFO on is unlocking the muscle spasm that makes a transport chair a necessity. I am so thrilled!
This morning and yesterday I was able to walk to the bathroom with a much more efficient gait. And I can flex my foot on my own for a bit first thing in the morning.
I know to the uninitiated it might not sound like much, but to me and those who know me, it’s a big deal. I’m so excited I told Mom this morning that my goal is to take a walk this Fall by myself.
I’m fine if it’s just a super short jaunt around the cul-de-sac and mobility aids are required. Doing it on my own is what I want most.
“So how did you get into this line of work?” Dan asked Bob.
Bob explained to us that his degree is in engineering and he did some volunteer work that got him involved in the field of prosthetics and orthotics.
Good people show up everywhere if you’re looking, and I am so grateful because good people are an anxious thought’s kryptonite.
The brace itself helps me handle anxiety too, because my drop foot and anxiety are the codependentest things that ever codependented. When my foot is in flexion, my whole body aligns and then my brain goes, “Oh, this feels nice. We don’t have panic attacks with unspasmed muscles. Let’s chill.”
I was able to do a few minutes on the recumbent exercise bike yesterday, which I’m hopeful will strengthen my knees enough I can be kissed by a hottie celeb and not go down.
HYPOTHETICALLY. Chill y’all.
I’m already sitting in a much more controlled descent instead of just plopping into the recliner.
Moral of the story: if you are hesitant about getting an AFO, I will gladly knock some sense into you. Or you could just re-read this post.
