Fusion in Fission | Part Two | GRAPHIC PHOTOS

Fusion in Fission: My Tumultuous Recovery from Major Surgery in 2020

This is Part Two of a three part series. If you haven’t already, read Part One here.

Part Two

Despite being only five days out from my ankle fusion, I was determined to make it to my niece’s thirteenth birthday party. My sister, Lindsey, and her first-born, Addison, had lived at home with my parents and I for the first year of Addie’s life. In the months leading up to Addie’s birth, Lindsey and I would stay up late, dreaming aloud about what her daughter would look like, who she would be. As Addie grew from baby to toddler in our house, the connection I felt with her deepened. I couldn’t wait to watch her grow up. So missing out on her becoming a teenager wasn’t an option I entertained for even a moment. I was going to that party, four days out from major surgery.

The first hurdle was showering. I sat in my wheelchair in our tiny bathroom while Alec struggled to pull up the thick plastic cast cover I’d gotten in preparation for my surgery. I wasn’t yet in a hard cast, and the silicon seal of the cast cover kept getting caught on all the ACE bandages wrapped around my leg. Each time he tugged the cover upwards, bandages would go with it, and he’d have to pull it back down again. I winced,harshly sucking in air every time he pulled up. Part of my surgery had been cutting my Achilles tendon, and tugging the cast cover over the area was particularly painful. 

“Are you sure you want to do this today? I’m sure they’d understand–”

“I’m going.”

After a rough ten minutes, the cover was on, and I gingerly transferred to my shower chair. I was already exhausted but hell-bent on pushing through. Washing my hair took every ounce of energy I had. After my shower, it took another twenty minutes just to get dressed, and my ankle was screaming in pain from being down so long. I laid in bed with my leg elevated while I applied makeup flat on my back, a mirror perched precariously on my lap desk. By the time I was loaded in the car, I’d never been more tired in my entire life. 

Mercifully, the drive to my parents’ house was short, and I was soon in a recliner with my leg elevated and a plate of food in my lap. I watched Addison open her presents and blow out her candles, her eyelids decorated with eyeshadow for the first time. Addie’s seven year-old sister, Lucia, performed an original song for me on my dad’s busted, out of tune guitar. For a while, it felt like a remarkably normal Sunday. I was so glad I came. And then the pain hit.

I tried to ignore it at first. The last thing I wanted was for Addie’s big birthday to become about me in any way. But discomfort quickly morphed into agony, approaching the same level as that first night in the hospital. Alec could tell something was wrong. He signaled me with his eyes, silently asking me what was wrong.

“We need to go,” I answered his concerned face, dabbing at my eyes with a paper napkin. 

I said a quick goodbye and left the party barely holding it together. As the car door closed me in, I broke. I had done way too much too soon, and now it was time to pay up. I sobbed as we made the short drive back to our apartment. When I was settled on the couch, Alec brought me a painkiller, his face etched with fear.

“Um, babe?” he began. “You only have two left.”

I had been taking my pain medicine on the same schedule as I had in the hospital, every four hours. What I didn’t realize as I’d stuffed those prescriptions in my bag the day I was discharged, was that I wasn’t prescribed the amount needed to maintain that schedule at home. Alec admonished himself for not realizing sooner that the supply had dwindled, but I didn’t blame him. We were both exhausted. I assured him we would get it sorted out tomorrow. 

I called my surgeon’s office the next morning and explained my situation. But because of the opioid crisis, I couldn’t get a refill for two more days. There was no way around it, nothing they could do. I hung up in disbelief, and had no idea how I was going to make it through the next 48 hours. If I was still in intense pain when I was taking the pills, how could I survive the pain that was coming without them?

Alec rationed my supply by cutting the remaining pills in half. I waited until the pain was unbearable before taking them, but it didn’t take long for the pain from having my bone and tendons cut open to become unbearable. I tried supplementing with over the counter pain medicine, which entered my bloodstream and laughed. All too soon, I was looking at surviving the next 24 hours with zero pain medication. And then a family friend, an angel of a human being, texted me that she had a handful of Percocet left over from a surgery she’d had months ago. She saved me. I didn’t care how illegal it was. I just needed the pain to stop. I got through the day.

The next day, I got my refill, but the strength was half of what I had been taking before. For a day or two, it seemed a sufficient amount, and I thought I was finally rounding the corner and could wean off of the painkillers in the next couple of weeks. I slept my days away, partly from the medicine and partly from the exhaustion of my body trying to fuse bones together. I found it nearly impossible to keep my eyes open for long. During the middle of an episode of whatever I was binge watching/sleeping to one afternoon, pain shot through the bottom of my foot, jolting me straight up on the couch, wide awake and gasping through gritted teeth. A Charlie horse-like cramp rippled through my foot and calf while I dug my fingernails into the cushions. Once it started, it wouldn’t stop. Every day and every night, the cramps would come without warning, the pain a loud siren in my brain. I stopped sleeping.

By March 2, I was back at the surgeon’s office so they could take off the cast and investigate. Alec had to be back at work, so my mom was with me that day. In the waiting room, she dragged a chair over for me to prop my leg up as the cramps rocked me over and over again. I groaned, in too much pain to be embarrassed, while my mom rubbed my back and reminded me to breathe. She’d done the same on the hour long drive that morning. By the time we were called back, I was panting, all color drained from my face. 

Brian, the friendly, stocky man who would be removing my cast led us into a small room used exclusively for that purpose. A wall lined with cubbies held different colors of plaster and cotton padding. Fine plaster dust lined nearly every surface, including the floor and a large black table that dominated most of the room. My wheelchair barely fit in the space, so my mom stood in the hallway, directly behind me. Brian sat on a stool in front of me, propped my leg right on his lap and began unraveling the bandages. 

“I have no quad muscle,” I told him in a panic. “You have to hold my leg or it’s going to fall.”

“I’ve got you,” he reassured me.

“Really, she has no control over her leg,” my mom reiterated from behind me, sounding like she was about to panic herself.

“I promise I won’t let it fall,” he said as he continued unwrapping the bandages, revealing the white cottony splint underneath.

As layers of the cast were stripped away, I began shaking uncontrollably. I’d never felt more vulnerable in my life. Less than two weeks prior, my bones had been cut into. I was so fragile, placing my most broken and delicate pieces into the hands and the lap of a stranger. He began ripping away at the pillowy cotton surrounding my leg, and I was struck by the realization that I did not want to see what was under there. It was too soon. I wasn’t ready to see my foot in a fixed position, the skin held together by stitches. But Brian gently removed the last of the splint, and there it was. I looked for only a moment, enough to see the thread looping through my skin and my foot no longer hinging at my ankle. And then I was in a full blown panic attack. My ankle was no longer supported by the splint, and even though removing it had made the cramps go away, I wanted it back on. 

I was wheeled into an exam room, where I laid on a table, my now exposed foot and ankle resting uncomfortably on hard metal. I couldn’t stand the feeling and asked for a pillow immediately. Clinic staff brought me the pillow and some water, leaving the door open for more air. Everyone was sure I was going to pass out. Instead, I laid there and cried quietly, while my mom rubbed my temples and tried to distract me with gossip, at my request. Finally, Dr. Szatkowski entered. He gently examined the foot that I refused to look at, telling me that I had minimal swelling and my incisions looked good. My mom took pictures, in case I changed my mind and wanted to see it later. The plan was to remove a few stitches, put me in a hard cast, up my dosage of painkillers and add a muscle relaxer for the cramps. 

  • Post fusion ankle without cast
  • Post fusion ankle without casr

“Hang in there,” he said as he left the room, his signature goodbye. 

My mom took the pill bottle out of my purse, on the advice that I should take one before my foot and ankle were handled some more. Someone came in and removed stitches from the bottom of my foot. I had no idea why there were stitches there, but I was too mentally drained to ask. Soon after, Brian came in to plaster my leg with a hard cast. The moment my ankle was supported again, I felt the tension in my shoulders relax.

“Does that feel better?” Brian asked as he held my foot in his lap, waiting for the plaster to dry.

“Yeah, it does,” I answered earnestly. “It’s been a rough two weeks.”
“Those fusions are rough. Did he show you your x-rays?”

“No,” my mom answered this time. “He didn’t.”

“Oh, really? I can get them pulled up for you if you want to see.”

Mom looked at me for confirmation. “Yeah, I do,” I replied.

Brian finished with my cast and swiveled to the computer. After a few keystrokes, my images were up. I was not prepared for what I saw. When Dr. Szatkowski called me the night before my surgery to tell me he’d be using a rod instead of a plate in the fusion, I had imagined a little one, maybe a few inches long, inserted into my ankle to keep it stable. My mom and I stared open-mouthed at the computer screen. The rod was decidedly not just a few inches long. It had been inserted through the bottom of my foot, went all the way through the middle of my tibia, and was screwed in just below my knee. The stitches in the bottom of my foot had been holding together the insertion site. 

“Holy shit,” was all I could manage to say. We snapped pictures of the images on the monitor as Brian cycled through them. Mom called a variety of family members on the drive home, sharing our disbelief with everyone.

A week later, I returned to have the rest of my stitches removed, which meant another cast removal and plastering. Everyone at the clinic was in agreement that I looked much better and much less like a ghost. I took the compliment. Getting the rest of the stitches removed was more painful than I had anticipated, but soon enough I was wrapped in another hard cast and on my way back home. I wouldn’t need to be seen for another month. 

Three days later, I was back. The pain under my cast had ramped up to an unbearable level over the 72 hours since I’d had my second hard cast placed. I could never get comfortable, no matter how I positioned my leg on the pillows in front of me, and by the third day, it felt like my heel was being seared with a branding iron. Again, I found myself shaking and pale in the clinic as my cast was sawed off of my leg, my plaster dust mixing and settling with everyone else’s who’d been in that little room.

The exam room I was put in this time had its bed right against a large window. I looked down at the street from the fifth floor, wondering what it might feel like to fall all the way down to the circle drive. More and more over those three weeks, my thoughts had turned dark. What might it be like to down the whole bottle of painkillers on my nightstand or to fall from this window to the concrete below? I never seriously considered it, but my mind lingered on the ideation, of what it might be like to escape this body that was nothing but constant pain. I just wanted a break. I wanted out.

I shifted my glance from the ground five stories below to my exposed foot and ankle. It was good I had come in that day. My heel was raw and bleeding, leaking brown fluid on the paper covering the table. A scabby rash covered my upper calf. I was allergic to the padding used in my cast. Clinic staff, including Brian, talked to Dr. Szatkowski on speaker phone, sending him pictures of the horror show and trying to figure out what to do next. He was on the other side of the hospital, in between surgeries. 

“Okay,” Brian said as he reentered the room. “No more cast.”

“So a boot or something?” I asked.

“No. He wants everything to be able to breathe.”

“What?” I asked, incredulous. “How will it be protected?”

“We’ll give you a brace to sleep in. But during the day, you’ll need to keep it uncovered and elevated. He also wants to start you on antibiotics.”

He stepped out of the room and I turned to Alec, wide eyed. I was only three weeks out. I was supposed to be in a cast for eight to ten weeks. The thought of having my ankle exposed and unsupported was too much. I sobbed in fear and exhaustion. I couldn’t stop, not even when Brian and another staff member came back into the room.

“She’s worried about her ankle not being supported,” Alec explained on my behalf.

“Well,” said a dark-haired woman in a white lab coat, “Don’t fall!” 

It was a serious warning, and completely ridiculous. In all my life with a progressive neuromuscular disease, I never had a choice on whether or not I was going to fall. It happened without warning. If I was lucky, I had a choice in how I was going to land. After her asinine advice, she explained that I would need to change my bandages and wash the wounds on my foot and ankle twice a day. I could barely stand to look at it, and now I would have to touch it multiple times a day, while trying not to fall each time I transferred in and out of the shower. I was terrified. 

Brian supplied us with some gauze, non stick medicated pads, and medical tape. An orthotist brought my night brace in and showed me how to strap myself in and extend a metal bar on the side to prevent myself from rolling over at night. I rode home in the back seat of our car, still strapped into the brace and cloaked in disbelief. I called my boss to let her know I wouldn’t be back next week, as I had originally planned. 

“I don’t think we’ll even be open, Monica,” she confided. It was March 12, and COVID-19 had started to surge in Indiana. 

When we got home that evening, my mom came to sit with me while Alec went out to fill my new prescriptions and get some groceries. We’d just run out of the freezer meals I’d prepared before the surgery. I hated having my ankle exposed, covered only by a thin layer of gauze. It felt like I was wearing a shoe made of concrete that kept getting tighter and tighter. My toes, having not moved since I was a toddler, felt like they were constantly contracting backward. But each time I looked, they were as still as they’d always been. Nerve pain danced across the bottom of my foot as their electricity started to come back online, making my whole leg jolt. Brown discharge continued to stain the gauze.

My mom stayed with me that night for hours. Alec’s short errand at the store had turned chaotic. News of upcoming lockdowns had sent people into a frenzy.

Alec 8:07 pm: I’m going to get home as soon as I can but it is absolutely nuts in here

Alec 8:07 pm: Never seen it like this

Alec 8:07 pm: Everything is gone

He made it home sometime after nine, looking haggard with arms full of grocery bags and prescriptions. It was our first glimpse into what recovery during a pandemic would look like.

The next day, we had to begin the washing routine. I sat on my shower chair and unwrapped the gauze with trembling hands while Alec put on gloves and opened the new packages of our limited medical supplies. I turned the handheld showerhead to the lowest water pressure setting and pumped soap into my hands. With the lightest touch I could muster, I lathered the area. Steri strips were still placed over my incisions. I wouldn’t remove them for another few days. After I gently dried my foot with a clean towel, Alec placed a medicated pad on my heel and the place where my Achilles tendon used to be, finishing the process by wrapping fresh gauze around my foot and ankle. This would be our routine every day, twice a day, for four weeks. 

It’s at this point, if my life was a movie, that a montage would start. The twice a day cleanings would fade in and out under inspirational string music, my wounds closing and fading in three minutes of screen time. There were so many times when my trembling hands were peeling away the Steri strips, or touching the most painful parts of my body with soap and water, that I wished I was ahead of it, looking back at a faded memory. But each day crept by slowly, painfully. My legs broke out in rashes from the antibiotics. We discovered that the rod insertion site was also beginning to look infected and began taking daily photos to send to Dr. Szatkowski so he could monitor my progress without the risk of physically going to the hospital. I was never comfortable, not when my ankle was exposed during the day, and not when I tried to sleep in the brace at night. I barely slept at all.

Warning: Extremely Graphic Photos Below

Alec worked at a retail store that never entertained the idea of closing during a pandemic. His PTO had been wiped away by March. I was alone all the time, my villagers in Animal Crossing the only interaction I’d have for hours. I cried every day. I sobbed to Alec about how long each day felt, how I just wanted it to be over. I was consumed with guilt for unloading on him every day when he came home. He was working, terrified of getting the virus, and then coming home to a wife that was a complete mess. Even his lunch breaks were taken up by rebandaging my wounds. There wasn’t an end in sight for either of us, as the light at the end of the tunnel seemed to be getting dimmer and dimmer.  

It became more difficult to get the medical supplies we needed when we ran out. Gloves were impossible to come by at any store. My mom scored some and brought them over. Next, we ran out of the non stick medicated pads. Alec’s mom got those. Our families helped us when they could, but because of the virus, we were largely on our own. I couldn’t risk getting sick while my immune system was preoccupied. I had gone into surgery expecting visitors and company while I was home recovering, but it just wasn’t an option while the virus surged outside of my apartment walls. It was a loneliness I’d never before experienced, deep and cold.

Eventually, against medical advice, I fell. I was transferring and missed my chair. Alec was home for lunch and we’d just been through our washing and redressing routine. He came back inside from taking our dog out to find me collapsed on the bathroom floor. All I could hear was the woman in the lab coat, a broken record at max volume in my head.

“Don’t fall! Don’t fall! Don’t fall!” 

I had no idea how to get up. Before the surgery, I would’ve gotten up on my knees, but with my foot in its new, fixed position, my toes would be digging straight into the floor. 

“You can do this,” Alec encouraged me, crouched next to me with his hand on my back. “You’re okay.”

After a beat, I took a deep, shaking breath and pushed myself to my knees. It didn’t hurt as much as I thought it would. Keeping the momentum going, I lifted my body to the toilet seat, and then into my chair. 

“See?” Alec asked, his hands on my shoulders as he looked me in the eyes. “You did it.” Despite it all, I smiled.

I’ll always be grateful that he didn’t pick me up off the bathroom floor that day. As exhausted as we both were, as easy as it may have been for him to scoop me up, I needed to be reminded that I was still me. I was the little kid who was bullied relentlessly at school for her leg braces but had the courage to show up every day anyway. I was the girl who fell on stage during opening night of the fifth grade musical and got up and kept dancing. I was the teenager who defiantly threw PVC ski poles into the woods after my gym teacher tried to embarrass me by making me use them to propel myself around the track as my peers ran laps around me. I was a woman made of every broken piece of myself, gluing down each shard of sadness, humiliation, and disappointment until I became a mosaic of tenacity. My ankle may have been fragile, but I was still strong and resilient. I would not let this recovery break me. I could fall and pick myself back up again. I could glue the pieces down and make something beautiful. 

By early April, my appointments with Dr. Szatkowski were virtual. Via Zoom, he told me that I could stop the twice a day washing and redressing, instead just cleaning during my regular showers. My wounds had finally begun to close and fade. I held up my bulky night brace in view of the webcam and asked if I still needed it. He submitted an order for a much smaller one, which arrived three days later. Without the imposition of the giant brace, I finally began sleeping better. I weaned myself off of the painkillers and stopped crying all the time. I began spending more time upright. After a full seventy days inside my apartment, I ventured out to the park, where Alec pushed my wheelchair in the canopy of trees by the river. The sun warmed my skin and had never felt so vitalizing. Things were finally starting to approach normalcy.

In mid May, a CT scan was ordered to check my internal progress, since I was still unable to put my foot down after three long months. My skin had healed, but the internal pain when I tried to put my foot on my foot plate or the ground stopped me every time. When I was in my chair without the brace, I either crossed my leg or held my foot up like a flamingo.  On May 26, Dr. Szatkowski’s office called with the CT results. I only remember the end of the initial sentence.

“…fracture with nonunion.”

The words bounced around in my brain, and I was unable to pin down their meaning. I asked the woman on the line to repeat herself until it sunk in. My ankle was fractured at one of the screws. My ankle wasn’t fusing. After 98 agonizing days, I was being told my surgery had failed. The woman on the other end of the line told me they would be prescribing a bone stimulator device, an ultrasound machine that I would strap to my ankle for twenty minutes a day to promote bone growth. Insurance rarely approves them, she informed me, and it could be weeks before I got one. They would keep me updated. Hang in there.

The call ended, and it was just me and the morning silence in my bedroom. Alec had been at work for hours. For the first time in weeks, I began to cry. 

You can be a part of finding a cure for CMT. Help me to ensure there are less stories like mine by donating to the CMT Research Foundation. The CMT Research Foundation (CMTRF) is the only organization focused solely on delivering treatments and cures for CMT. 90¢ of Every Donated Dollar Funds Research. Donations are being doubled through December 2020. Learn more about the CMTRF at

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