FUSION IN FISSION: MY TUMULTUOUS RECOVERY FROM MAJOR SURGERY IN 2020
I cried off and on for most of the morning. I was grieving and in disbelief. How could it be that I had gone through so much pain and anguish only for the fusion to fail? I replayed all the worst moments in my head: the agony that first night in the hospital when my nerve block had worn off, the nerve pain and muscle spasms that made my leg jolt each night as I tried to sleep, the twice a day wound cleaning and re-dressings. Each exhausting day, I had told myself that it would all be worth it, that eventually I’d claw my way through the brambles and make it to the other side. Bloodied and bruised, somehow I’d made a wrong turn. The other side looked remarkably similar to the one I’d been standing on for the last three months.
My phone buzzed again sometime in the afternoon, the caller ID displaying my surgeon’s office number. I steeled myself for more bad news.
“Hi, this is Dr. Szatkowski. I’m calling to go over your CT results.”
“Okay…” I began, wondering whether or not he knew that the bad news had already been delivered to me by his nurse.
“So the CT did show a fracture in your ankle. Essentially, the titanium rod we used in your fusion is much stronger than your bone, and it caused a hairline fracture. Your ankle is fusing, just slowly. There’s a device called a bone stimulator that will hopefully help the bones fuse more quickly.”
“Wait,” my head was spinning. “My ankle is fusing?”
“Yes, it’s fusing.”
He talked to me a little more about the bone stimulator and we hung up, his signature “hang in there” punctuating the call. For the second time that day, I was in utter disbelief. Whipping from despair to hope left me near-euphoric, quite possibly the happiest anyone has been to hear that their ankle was fractured. Fractured, but fusing. I just had to be patient and wait for the bone stimulator. I could handle the pain until then. I’d been practicing for three months.
By the time June rolled around, I was desperate to get outside. I felt like I had missed all of Spring tucked away in my apartment. The walls had started talking back. My parents’ backyard proved to be the perfect getaway. It was close to home in case the pain became too much, there was a pool, and most importantly, fresh air. On one hot evening, I decided to get in the water. Alec and my mom helped me lower my body onto the pool steps, while I held my leg in my hands. Once I was in, I gingerly pushed away from the steps and floated, my exhausted leg buoyed by the water. I let out a long sigh and tilted my face toward the lowering sun. It was the first time I’d felt something close to relief in months. Alec and my mom smiled down at me, and I was reminded of their relieved faces in the recovery room, before any pain had settled into my body.
Our Friday evenings became a kind of ritual. Every week, Alec and I would make the two minute drive, entering the backyard oasis with our dog Murphy under one arm and a six pack under the other. My parents had stopped going out because of the virus, and our weekly company soon became an unspoken expectation. In summers past, we’d spent Friday evenings on the patio of our small town bar, our table overflowing with friends and family, always surrounded by people on all sides. Now, as we were all searching for a hint of normalcy, spending those Fridays together felt right, even as we found ourselves surrounded by empty chairs.
As the weeks passed, Alec and I grew closer to my parents than ever. I loved listening to my Dad’s old stories as my mom made faces behind him when he exaggerated the details. I loved talking politics with them, sometimes debating but mostly agreeing. I loved laughing until it felt like my jaw would fall off, even though I can’t remember a single joke that was told. We’d stay at the patio table long after the sun went down, my foot propped up on beach towels, the cacophony of tree frogs (and my dad’s carefully curated playlist) the soundtrack of our summer. Getting out of my apartment and my own head mended my fractured soul, even if my ankle was still swollen and throbbing.
In July, I was still waiting on the bone stimulator, and a new pain had begun creeping into my right hip and groin. I had a virtual visit with Dr. Szatkowski, where I explained the new pain to him through my webcam. I was positive it was from keeping my leg up all the time and would go away once I was finally able to put my foot flat on the floor. Without a quad muscle to lift my leg, my hip had to do most of the work, and she was tired. Still, Dr. Szatkowski wanted me to see a hip specialist and scheduled me for hip x-rays later in the month. Before we ended the call, I asked about the bone stimulator. It had been over a month, and I’d heard nothing. The paperwork was still tied up with insurance, but they’d let me know as soon as they had an update. Hang in there.
While I always had Fridays to look forward to, my weekdays were increasingly monotonous and dull. I was so tired of sitting on the couch, endlessly scrolling through the bad news on my phone. I needed to do something, anything that would stimulate my brain. The pain in my ankle had become a baseline that I could handle, always in the background, but something I could occasionally tune out. One day, on a whim, I decided to search for seated workout videos on YouTube. Sitting in my wheelchair, still in my pajamas, I followed along with a seated boxing workout. At first, I felt ridiculous. I closed the blinds and scoffed at myself, sure that I looked a little pathetic. But with each punch I threw into the air, I began to feel a little lighter and a little more in control. I finished the workout, out of breath and smiling, and decided I would do it again tomorrow. I followed through the next day, and the day after that.
I became addicted. Suddenly, when I woke up in the morning, I had something to do other than transfer from my bed to the couch. I had a reason to change out of my pajamas. After the pain I had been in since February, I found myself enjoying the pain that came from exercising. It was pain I had control over, pain that made me feel better. Unlike my fusion, I could see what was on the other side of this pain: Strength. My arms hurt, but transferring had become a breeze. My core muscles ached, but my back had stopped hurting. If only I could get my ankle, and now my hip, to quit screaming, I might have been something close to happy.
The appointment with the hip specialist began with x-rays, where a technician contorted my lower half in ways that made me want to punch her. I decided against it, having already worked out that morning. After waving at my old buddy, Brian, I was wheeled into an exam room. The hip specialist, Dr. McKinley, entered shortly thereafter, his demeanor immediately more gruff than Dr. Szatkowski’s. I got the distinct impression as he fidgeted with his face mask that he would not be the type to tell me to hang in there.
I explained to him from behind my own face mask about the pain I’d been having in my hip and groin, that I was sure it was from holding my foot and leg up constantly for the last four months. I told him about the fusion and the fracture, how I was still waiting on a bone stimulator. I kept my explanation light, leaving certain details out. I didn’t tell him how the week before, Alec had found me sobbing on the toilet, unable to pull my pants up because my hip felt broken. I didn’t tell him that even with my newfound upper body strength, transferring had become a task that required all my mental energy, because I knew just how badly it was going to hurt. I just wanted to be fine. I didn’t want anything else to be wrong with my body.
Dr. McKinley swiveled his stool to the computer behind him and pulled up the x-rays I’d just had done. It just took one look to see that something wasn’t right. My femur head was barely in my hip socket.
“You have hip dysplasia,” he told me, pointing where I was already looking.
Turning to me, he cupped one hand over his balled fist. “A normal hip socket covers the femoral head like this. But in your case,” he opened his cupped hand, “the socket is shallow and doesn’t completely cover it.”
He turned back to the computer, tracing his finger along the screen. “You see this line here?”
“The back of your socket barely covers it at all.”
“I see a lot of people with hip dysplasia,” he continued, turning back to me. He placed his hands a couple of feet apart, an imaginary chart in the air. “The worst I’ve seen is here,” he wiggled his right hand. “The most mild here,” he wiggled his left. “You’re here.” His left hand moved close to his right. I wasn’t the worst he’d seen, but I was far from mild.
“The good news is,” There was good news? “You don’t have arthritis yet.” He swiveled back to the computer. “There’s a little bit here,” he pointed at something I couldn’t see. “But nothing too bad.” Back to me. “There’s a surgery I do for this.”
Alarms started blaring in my mind.
“I’ll cut into the hip bone…”
“…repositioning the pelvis…”
“…Screws will be inserted…”
“…your hip bone will fuse back together…”
“…recovery is four to six months. I won’t lie to you. It’s painful.”
No, no, no!
Had it not been for the face mask, perhaps he would’ve registered my disbelief. Another major bone surgery? Another hellish, long recovery? The ankle fusion was supposed to have had a recovery time of twelve weeks, and look how that turned out. I felt like I had taken my car in for an oil change only to be told they’d found trouble with the transmission. I couldn’t afford another fix, I couldn’t handle it. I looked down at my right foot, wrapped in a brace.
“I’m still not healed from this,” I said quietly, as much to myself as to the surgeon.
“Well, let’s schedule you to come back four months from now. If you had a lot of arthritis, I’d say let’s do this within a year. Once arthritis sets in, the only option would be a hip replacement. But we have some time.”
He was up and almost out of the room before I remembered to ask, “What’s the name of this surgery?”
He was gone when his nurse handed me a slip of paper on which she’d written down the name. “If you have any questions about this surgery,” she said warmly, “you call me!”
Alec and I were silent as we scheduled the follow up appointment at the check out desk. We said nothing as we made our way down the hallway, slid into an elevator, paid our parking fee, and exited into the parking garage. Once we were enclosed in our hatchback, slathering our hands with hand sanitizer and removing our masks, he broke the silence.
“So? What do you think?”
And the truth was I had no idea what I thought. A thousand thoughts were ping-ponging around my brain. The moment I grabbed one, another popped up. I had been wrong about the pain being a symptom of holding my leg up. I needed another surgery. A bone surgery with a longer estimated recovery than the one I was still in. A surgery whose name I couldn’t remember or pronounce, or a hip replacement. How would I transfer with a recovering hip? How would I even sit up? Had he ever performed this surgery on a wheelchair user? Why didn’t I ask that?
“I don’t know,” was all I could say.
On the drive home, I found my voice and began spilling those jumbled thoughts out of my head as they came. By the time we were home an hour later, we had a plan. I would focus solely on my ankle recovery. My next hip appointment wasn’t for four months. I would do some research on the surgery, but not stress about it. I would continue to wait for my bone stimulator, keep getting stronger, and deal with November when it came. My plan, essentially, was to ignore the news I’d been given.
By August, I still hadn’t received the bone stimulator, and my hope of it ever actually getting approved was waning. Each day, I strapped myself into the ankle brace and tried to live as independently as possible. I kept working out and doing more around the house. The Friday evenings at my parents’ continued. Still, I struggled with feeling like just a patient instead of a person. I had lost myself a little to the never-ending pain, and without the hope of the bone stimulator to speed my recovery along, I began to resign to the idea that the pain wasn’t going to end anytime soon. It was during those moments of defeat when I would inevitably think about the hip surgery, and before I had a chance to recognize the signs, I was spiraling back down into depression.
One afternoon, back on the couch and making a million mental excuses of why I couldn’t just get up and exercise, or hell, even just open the blinds, an old friend messaged me. Now a successful photographer, she had seen my recent social media posts and wanted to know if I was interested in being photographed. The idea she had in mind was an old Hollywood theme. I would get to don a sparkling floor length gown and do my hair and makeup like the stars of the 1940s. I said yes immediately, before I had time to come up with all the reasons why I should say no. The thought of getting to pretend I was a glamorous starlet instead of the depressed patient languishing on the couch woke me up like a splash of cold water to the face. I got up and exercised, suddenly motivated.
The photoshoot was set in an old boudoir studio, accessible by a cramped, slow elevator. The floors were a black resin with gold streaked throughout, and there was glitter on nearly every surface, remnants of past shoots. In a bathroom lined with photos of glittery asses, I attempted to change into the gown, no easy feat given the fact that I couldn’t stand. Alec and I managed to get it halfway on, and I came out with the dress bunched around my waist and a plan in mind. I had spotted a bed by the second story windows in the back of the studio when we came in, and decided to finish getting dressed the way I always did at home: transferring to the bed and wriggling around like a fish out of water. Finally, the dress and all the layers of crinoline dropped over my legs, the sparkling fabric hiding the black brace on my ankle. Despite the way in which I had to put the gown on, as soon as it touched the black, glittery floor, I felt like a movie star.
We shot for a couple of hours, and when I got back in the car, my hip and ankle were throbbing, but I couldn’t stop smiling. As I had posed, smiled, and smoldered, I couldn’t stop looking at Alec. He had watched the whole time, taking his own behind-the-scenes photos and telling me that I was beautiful. I thought of the looks I had seen on his face over the last six months. I had seen him look terrified, concerned, exhausted. But that day, he looked proud. He looked like he was getting a piece of his wife back. And later that night, he did.
Photos by Kristen Mittlestedt
In the weeks following the photoshoot, my confidence began coming back to me. Throughout September, I released weekly videos showcasing how I accomplished daily tasks, such as making my bed, as a disabled person. Like exercising, creating the videos gave me a reason to get up and work, to put my brain to use. Still, the pain continued, unconcerned that I was trying to move on. It felt as though I was always wearing a concrete shoe two sizes too small. There was constant pressure on all sides of my foot, and my toes felt like they were being both stepped on and contracting backwards all at once. All I wanted to do was to take off the shoe. My brain screamed at me to just roll my ankle around, but of course, my ankle remained in its permanent, fixed position.
Dr. Szatkowski called me in for an appointment early that month, concerned about my continued pain. A few days before, I had gone to a local imaging center for x-rays, and I was now in the familiar waiting room, holding the report in my hands. The words “overall bad bone quality” stared up at me in black ink. No shit, I thought to myself. But my ankle had fused and the fracture had healed, despite the fact that I never did receive that bone stimulator. So why was I still in so much pain?
After my vitals were taken and I had answered the same pain assessment I had taken on the same grimy iPad every single visit since February, I removed the brace and sock before Dr. Szatkowski came in. I knew the drill. He said hello in his friendly way as he entered the exam room and took a seat on the stool, placing my foot in his lap. He handled it in the same rough way doctors have handled my feet my entire life, but surprisingly, it felt okay. Until he pressed his thumb into my inner ankle. My vision tunneled, and I involuntarily hissed, “Oh god!” which made him jump and roll backwards on his stool. It would’ve been funny had it not been excruciating.
“Sorry!” he exclaimed genuinely, his eyes wide.
“That’s okay,” I replied, even as tears stung the corner of my eyes. He had directly pressed the spot that hurt the most, the spot that throbbed every time I tried to put my foot flat on the floor. But it seemed we had our answer. He suspected that my tendon was rubbing against the thread of one of the screws sticking out of my bone. To be sure, he scheduled me for a diagnostic test. I would be getting an injection under ultrasound directly into the area. The thought of a needle being pushed into the most sensitive part of my body filled me with dread, but, as I told myself over and over, I’d been through worse. The appointment was scheduled for September 15, five days before my 31st birthday.
Because of COVID-19 restrictions, Alec couldn’t come back with me. So I found myself laying on my side in a hospital bed alone, while the world’s chattiest nurse buzzed around the room preparing the sterile tools and filling me in about every detail of her life. I found it to be a welcome, albeit slightly annoying, distraction. A young doctor eventually entered, and told Nurse Cathy that it was his first week on the job. My stomach clenched as flashbacks of the student attempting to place my catheter played on the big screen in my mind.
After nearly an hour of prep, they were finally ready to start the procedure. I took deep breath after deep breath, in a desperate bid to calm my nerves. I felt so vulnerable. I had been protecting my foot and ankle for the better part of a year, and placing it in anyone else’s hands, even when those hands were attached to medical professionals, felt dangerous and wrong.
The first injection was lidocaine. I steeled myself, involuntarily clenching every muscle in my body as I stared at the wall. Moments before, the young doctor had performed an ultrasound on my swollen ankle and pushed so hard, I saw stars. I just knew the injection was going to be worse.
But then, “Okay, that part is over.”
I hadn’t even felt it! I smiled and let out the breath I’d been holding. I felt a little silly for being so scared. Next, it was time for the steroid injection.
“Little pinch and a burn now,” came the doctor’s voice from the end of the bed.
And maybe it would have just been a little pinch and a burn, had the lidocaine kicked in. Instead, immediate, fiery pain shot through my ankle as I clutched at the white pillow under my head, every instinct telling me to do anything to make the pain stop. But I knew I had to stay still. Steroid injections aren’t quick, and as much as I tried to hold it back, I wailed, tears and mascara soaking into the crinkled pillow. After five of the longest minutes on record, the needle was finally removed. I was sent home with a bandaid and an index card on which I was to report my pain levels every few hours over the next week. The pain got worse that night as the lidocaine wore off, and then a little better the next day before it returned to the baseline I was used to.
“What we can do,” Dr. Szatkowski told me a week later on the phone, “is go in and remove that screw and release the tendon.” My ankle had fused, so I didn’t need the hardware anymore, or my tendon for that matter. It would be an outpatient surgery. I thought it over while he explained the procedure.
Since the diagnostic injection a week prior, I had been researching ankle fusion recovery times for people living with Charcot Marie Tooth, like me. The anecdotal evidence I’d come across suggested that we healed more slowly, that many patients took at least a year to feel normal. It was for that reason that I found myself answering Dr. Szatkowski that day like this:
“I don’t want to have another surgery right now. I’ve been doing some research, and I think I should wait. I really don’t want to reset the pain clock.”
“Okay,” he responded, sounding a little surprised. “Why don’t I call you back in a month and we’ll go from there?”
A month later, he called me back and my answer was the same. Because within that month, I had begun making progress. I was able to start putting my foot flat on the floor for longer periods of time. I even started wearing a shoe for short periods of time without the brace. My nerve pain, a constant since the surgery, had started to disappear. My foot didn’t feel normal, or even good by any means, but it was more manageable than it had ever been. The concrete shoe felt a little looser. My hip began to feel a little better, less irritated now that it wasn’t doing all the heavy lifting. I decided that I wouldn’t decide on another surgery until it’d been a full year since the fusion. I decided to give myself and my body the gift of time.
So often, I think back to that dark drive on that early February morning. I think about what Alec said, about the surgery ultimately being my choice, that I could decide not to go through with it. What if I had changed my mind and we had turned around? When the pandemic surged a month later, would we have looked at each other, relief in our eyes, and thanked the universe that I wasn’t recovering from major surgery while the world was falling apart? We certainly wouldn’t have spent four hellish weeks washing my wounds twice a day, our medical supplies dwindling. We couldn’t have even imagined it. We also wouldn’t have imagined that almost a year later, I still wouldn’t be fully recovered. It’s easy to say now, with everything I know, that I would’ve made the decision to turn around. But I also know that if I hadn’t gone through with it that morning, I would wake up every day with a twisted foot and a heart full of regret. I wouldn’t know that there was worse pain, that it would last much longer than I could imagine. Both paths before me had been equally dark. I just had to choose one and follow it.
My life has been dictated by the disease coursing through my veins. And as much as I want to be seen as that badass disabled woman who can handle it all despite the limitations imposed on me by nature, after three decades, I’m exhausted. I’m so fucking tired. There isn’t a moment where I can lay CMT down and take a break. I carry it with me always, like Atlas with the world on his back. Sure, I have the power to make decisions about my medical care, about what treatment or surgeries I’ll have, but by the time it gets to that point, CMT has already whittled my choices down. This surgery now or that surgery later. The pain you know or pain unimagined. All you can do is pick a path and hope it leads you in the right direction.
The truth is, I still don’t know if I made the right call. So far, the pain from the fusion is worse than any pain I had before. Eventually, maybe I’ll get to that elusive other side. Maybe it will have been worth it. But one of the hardest things I’ve had to admit to myself is that I may have made a mistake, a mistake that put me through so much trauma, it changed me. I’m a little harder now, a little less optimistic. I carry a little sadness and fear with me wherever I go, knowing that there’s no turning around, that the path behind me has closed forever. Still, I also carry a dim lantern of hope for a pain-free life. Because as far as I’ve come from where I was ten months ago, there are many moments where I still feel stuck on that dark path, looking for the light. The moments when I’ve spotted it–those Friday nights at my parents, the glamorous photoshoot, getting a shoe on for the first time–have been among the brightest moments of my life.
Now I find myself at another darkened fork in the road. When my follow up with the hip specialist was scheduled for November, I was certain that my ankle would be fully healed, and I would be mentally ready to focus on hip surgery. The appointment was pushed to January, and still, I’m not there. Not physically, and not mentally. Perhaps the strongest thing I can do is admit that I am not strong enough to survive another recovery like this, that as much as I fancy myself a mosaic, I am not unbreakable.
If I do decide to go through with it, or if CMT dictates I must, I wonder about that morning drive the second time around. When Alec gives me an out, there’s a chance I might take it, that I might go back home and live with the pain I know instead of pain unimagined. As both paths loom before me, all I can do is choose one and hope that someday I’ll be able to claw my way through the brambles, and finally make it to that elusive other side. I just don’t know who I’ll be when I get there.
For most of this recovery, I’ve been fighting to get back to who I was before the world slipped away in that operating room. But I’ve come to realize that that fight was futile. Just like fused bone, there is no going back. Instead, there will always be the me before the surgery and the me after, two parts fractured by pain and trauma, two parts trying to reconcile who I’ll become. Fractured, but fusing.