“I was 18 years old before I ever let a boy hold my hand. It wasn’t because I was chaste or prudish. I’d spent plenty of time kissing in darkened rooms, on couches that smelled like Axe body spray and cigarettes. But when I would feel a hand inching toward mine, I would pull back or redirect it to my breast, which felt oddly less intimate. I was terrified if his hand touched mine, whatever boy I was kissing would be reminded I was different and wouldn’t want to kiss me anymore. After a childhood and adolescence full of bullying and rejection, I wanted nothing more than to be wanted.
I had been diagnosed with Charcot Marie Tooth (CMT) disease when I was 2 years old. CMT is a hereditary, progressive peripheral muscular neuropathy. In the most basic terms, the nerves in my lower extremities are damaged due to a gene mutation. Because the muscles in my lower extremities aren’t stimulated, those muscles atrophy over time. CMT is a progressive, degenerative disease without a treatment or cure. I was in kindergarten when I got my first pair of leg braces. By high school, I was using a wheelchair.
Being a visibly disabled student in a small town Indiana school system was never easy. In middle school, I was relentlessly targeted by a group of boys who would follow me in the hallways and quack as loud as they could to make fun of my waddling gait. Other boys would dare their friends to ask me out as a joke, leaving insincere notes in my locker to laugh at my excited reaction. Who would actually want to date the disabled girl? I began forming an idea I was not a desirable person, that my disability would always be the only thing about me anyone noticed at all.
It was because of this notion I started dating the first boy in high school who paid attention to me. He was not a nice person, but he wanted me, and that was enough. I never once asked myself if I wanted him back. For 3 glorious months in my junior year, I had a boyfriend, a real boyfriend who wasn’t embarrassed to walk alongside my wheelchair in the hallway. Every morning, I would wake up with butterflies in my stomach, finally feeling like I had a piece of what all my friends had been experiencing for years.
And then, seemingly out of nowhere, he lost interest. He stopped showing up, stopped messaging and calling. I waited for him before class one morning, desperate to know what I had done. When he showed up bleary-eyed with rings of white powder around his nostrils moments before the bell rang, I lost my nerve.
That afternoon, in the school parking lot, I confided in a friend I was hurt and confused about his sudden change in behavior. Why didn’t he like me anymore? She looked at the ground with her sad, brown eyes.
‘Monica,’ she began, unsure.
‘Yeah?’
‘Someone told me they overheard him making fun of you with his friends…’
‘What? When?’ I asked, my heart trying to claw its way out of my throat.
‘A few different times recently.’
I don’t remember how the conversation ended. I only remember climbing into my truck and driving home, feeling like all the air had been knocked from my lungs. I broke up with him that afternoon over text. I didn’t mention what my friend had told me. I was too humiliated. I just told him it seemed like he wasn’t interested anymore. He simply said, ‘Okay,’ and it was clear he’d been waiting for me to end things. I cried all night, some part of me knowing I wasn’t mourning him, but rather the idea someone, at some point, had wanted me. I wasn’t sure it would ever happen again.
Later that year, his friend posted to his social media page, making fun of him for dating a ‘cripple.’ Seeing such a venomous public display made me wonder about all that had been said about me behind my back during those 3 months, and my idea about being undesirable solidified into an absolute fact in my mind. I was done pursuing anyone. I would get through my senior year and get the hell out of there.
By the summer after graduation, I’d made a solid group of friends, mostly from Drama Club. For the first time in years, even as my body continued to deteriorate in function, I felt like I belonged. That summer, we sat in basements and talked about the future, about what we were going to do in college and beyond. We wrote songs and watched scary movies and stayed up into the wee hours of the morning laughing until we couldn’t breathe. If we decided to drive somewhere, they helped me load my wheelchair without hesitation. If I needed help opening something with my atrophied hands, they never made me feel bad about it. It was the inclusion I had always wanted, and their unwavering friendship helped me realize I didn’t need a boyfriend to feel desirable. My friends desired my company, and that was more than enough. I was happy.
One of the members of that friend group was a boy named Alec. A year younger than me, he had played Seymour in that past spring’s production of Little Shop of Horrors. Alec had a dry, quick sense of humor that made us howl. I found myself just wanting to be around him, to joke around and be silly. We would often end up next to each other in those group hangs, and we became fast friends, creating bits and characters to entertain ourselves and our friends. He never failed to make me laugh, and I felt more and more drawn to him. He had a girlfriend, so I kept my burgeoning crush under wraps. I knew where those crushes led, anyway.
Driving to get ice cream with my best friend Hannah one sweltering afternoon, she reached over and turned down the music we’d been blaring. ‘Alec said something about you,’ she told me. Hannah was the only one who I’d confessed my crush to. I braced for impact, remembering the conversation I’d had in the parking lot with another friend in the not-so-distant past.
‘What?’ I asked, on edge.
‘He said you’re the funniest person he’s ever met.’ She smiled and turned the stereo back up. Despite myself, I smiled too.
Shortly after Hannah’s declaration, I went on a weeklong trip with my mom to celebrate my graduation. I returned home to the news Alec and his girlfriend had broken up. That evening, he asked me to get together without the rest of our friends in tow. I had never felt more excited or nervous in my entire life.
We sat on the floor of my parent’s living room and talked for hours and hours. We talked about what had happened with my ex and his, about the things we liked, the things we hated, and everything in between while the sky morphed from pitch black to dark blue, and actual music videos started playing on MTV.
‘What time is it?’ he wondered aloud as he took his phone out of his pocket. It was 5:00 in the morning.
‘My mom is going to be getting up for work soon,’ he said as he scrambled to get up and out the door. I waited until he was turned away from me before struggling to stand up.
‘Would you want to hang out again tomorrow?’ he asked, turning back to face me.
‘Yeah, sure!’ I replied, failing at sounding cool as he raced to his car.
I fell into bed, unable to sleep, euphoric and terrified. I’d stopped looking for this, and here it was in front of me. Now, what did I want to do about it? In all those hours of talking, we hadn’t touched on CMT. Did he even understand the extent of my disability? Would he stop liking me if I told him? He was one of the kindest people I’d ever met, and I was falling for him more quickly than my heart could handle. I decided I would just talk to him about CMT the next day. I wanted to get it out of the way before I had a chance to have my heart broken.
He came over again the next night. Sitting on the living room floor, closer than the night before, the air between us felt charged, like all of my nerves were reaching for his. I had no idea how to start the conversation, or if I wanted to go through with it at all. As I pondered what to say, he reached for my hand. For the first time ever, I let someone take it.
‘Your hands are so small,’ he commented playfully. This was it.
‘Well,’ I began. ‘There’s a reason for that.’
I told him everything about CMT. I told him about my leg braces and why I needed a wheelchair sometimes. I told him it would get worse, that there was a 50/50 chance my kids would inherit it. The entire time I spoke, he never let go of my hand. When I’d finished, I asked him if he had any questions.
‘Does it—? Will you d—?’ His brow creased with concern and I smiled at his awkwardness.
‘Will I die from it? No. Normal life expectancy, even though the disease gets worse,’ I replied.
‘Good,’ he said, squeezing my hand a little tighter.
The next day, he asked me to be his girlfriend. As our friends left for college one by one in the coming months, we became inseparable. We took long drives on country roads and kissed each other whenever we could. I’d never felt more comfortable or more myself with anyone. We laughed and played, never putting on airs or hiding parts of ourselves away in fear of judgment. One night, as I pulled into his driveway to drop him off, he told me he was in love with me. I said it back without hesitation. This wasn’t a crush or unrequited fascination. This was real, big, heart-pounding, make-you-feel-sick love.
I started college in our hometown that fall. The campus was large and my legs had continued to atrophy despite my desperate pleas to the universe for them to stop. My part-time wheelchair use became full-time. I lived at home and commuted to campus, my legs still strong enough to drive. Alec enrolled in the same college the following fall, opting to move into the dorms. He would often meet me in parking lots around campus to help me unload my wheelchair from the back of my truck and steal a quick kiss before class. We were more in love than ever, despite the continuing progression of CMT. In the summer of 2010, 2 years after we had begun dating, we moved into a little apartment just off-campus.
Dating with a disability was terrain we had figured out. Living together was like being dropped on a new planet. All the things I had relied on my able-bodied mother to help me with had now become Alec’s responsibility. Can you open this? Reach that? Carry this? Help me get this shoe on over my brace? He never complained. Not once. But there was a voice in my head screaming this wasn’t fair to him, that I was a burden.
Shortly after we moved in together, I lost the ability to drive. My right quad muscle had atrophied. I tried physical therapy, but it didn’t work. I couldn’t safely move my foot from the gas to the brake pedal anymore. So driving me to classes and work became his responsibility, too. I felt so much guilt for something that wasn’t my fault, and it ate away at me until I was sure I was a burden. I was as sure of it as I had been of my undesirability all those years ago. I expressed my concern to Alec often, and he reassured me time and again I was not a burden, that he loved me and had accepted my disability as a part of our lives. But there was so much I had to unlearn, so much trauma I had to unpack before I could accept what he was saying as the truth.
So we did what we had done from the moment we started our relationship: we talked. We talked about CMT and how scary the progression was for both of us. We talked about how the way I was treated in the past made it hard for me to believe he’d still want me as he watched my body decline in function. But I wasn’t the only one with baggage to unpack. Alec began opening up more and more about his own childhood traumas: his parents’ divorce and his dad’s struggle with bipolar disorder, his childhood ADD diagnosis, and trouble meeting expectations in school.
These conversations took place over years, and slowly, we unpacked our baggage together. With time, I learned my physical disability doesn’t inherently make me a burden. Every person has unique challenges; mine happened to be very visible, but that didn’t innately make them bigger. In our relationship, we were two people both carrying our own burdens. And because we loved and trusted each other, because we communicated even when it was hard, the two of us helped to lay those burdens down. With every conversation, we began to understand each other more deeply. As we cleared the roadblocks in our minds, our relationship had a clear path forward.
Alec proposed in 2014, on the sixth anniversary of asking me to be his girlfriend. We were in our own living room, and I was reading the last paragraph of a letter he’d written to me.
‘If I can’t tell you how much I love you, then I’ll just have to show you. I’ll show you by being here with you always. No matter what happens to us, or where we end up, or what kinds of people we are next year… I will be right here with you. I love you so much, Monica. Right next to you is exactly where I want to be. Always…’
When I looked up, with tears in my eyes, he was kneeling in front of me, ring in hand. It was the easiest ‘yes’ of my life.
We were married exactly one year later. I had always imagined myself walking down the aisle, but I found myself just as happy to be rolling. I was rolling toward my best friend. No hesitation. No scary thoughts of not being enough. I was pure love on wheels. We sat in stools facing each other, so I wouldn’t be the only one sitting. He took my atrophied hands in his and didn’t let go the entire time.
Be a part of finding treatments and cures for CMT by donating to the CMT Research Foundation.”
This story was submitted to Love What Matters by Monica Engle Thomas from Indiana. You can follow their journey on Instagram. Be sure to subscribe to our free email newsletter for our best stories.
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