The Family Bible
As a kid, there were few things I enjoyed more than flipping through my parents’ wedding album. The squat brown portfolio sat on our bookshelf, tucked between James Patterson hardbacks and a giant family bible we stored important papers in. The album’s cover was a soft brown leather with a gold cross embossed on the front. It was a relic of its time, 1979. Holding the supple, worn book in my hands felt almost sacred. I imagine it’s the way some feel when handling some holy book. In many ways, this was our actual family bible.
Inside, behind yellowing plastic sleeves, my young parents looked back at me. My dad wore an all white tux, the pants of which flared out around white dress shoes. My mom wore her older sister’s dress, a balloon-sleeved white gown with a lace bodice. Her veil was also trimmed in lace where it framed her face. They both sported hairstyles of the time, which essentially meant lots of untamed volume, and for my dad a full beard. Their wedding party donned pastel in different hues. It all looked so vintage to me as a child. Now, of course it’s all coming back around again. Their wedding looks downright trendy these days, down to the rounded corners of the photographs.
As we flipped through the book, my mom would tell me the names of their friends, reminiscing about the connections they once shared. Not many of them remained in our orbit all these years later, but she always spoke of them fondly. Tapping her finger against the plastic sleeve, she would point out relatives that passed before I was born, her tone always a little wistful. “That was your great grandpa. He would’ve loved you.”
I would always linger on the photo of my mom walking down the aisle. Her eyes were lifted, undoubtedly looking toward my dad, just out of frame. She was flanked on both sides by her parents. My grandma wore a cream and lace frock, my grandpa a handsome tan suit. I loved this part of the album the most and dutifully waited to hear my favorite part. Sometimes, I would prompt her.
“Why didn’t you have just your dad walk you down the aisle like most people do?”
“Because he’s not the only one who raised me. It wouldn’t have been fair. I wanted them both to give me away.”
Oh, how I loved that! I loved the reverence for her mother mixed with the obvious logic and tradition. Of course it should be that way. Why should only one parent get to take part in that magical moment? Her reasoning made all the sense in the world to me.
“That’s what I’m going to do too,” I would always tell her. “When I get married, I want you and Dad to walk me down the aisle.”
Walking Down the Aisle
When I got engaged in 2014, I was losing the ability to walk. My progressive neuromuscular disorder, Charcot Marie Tooth, had progressed rapidly over the past five years. My right quad muscle had begun to deteriorate, and as a result I had lost the ability to drive. As long as I had something to hold onto, I could still stand for a few minutes. On a good day, with the right shoes, I could take a few shaky steps. But I spent the majority of my time in a wheelchair.
My fiancé, Alec, and I set our date for one year from the day we got engaged. I decided that in that time, along with planning the wedding, I was going to get strong enough to walk down the aisle. In my mind, there was no other option. When I dreamt of my wedding, I saw myself standing behind a set of huge double wooden doors. When the music started, the doors would open, and everyone would gasp as they saw me make my entrance. My parents would be on either side of me, and together we would walk down the aisle. That was the vision, and I was going to fight to make it a reality.
Years of physical therapy had taught me what to do next. It was time to get to work. I peddled on a stationary bike, willing my thighs to rebuild. After that, I got down on the floor and tried to get into a bridge position, grunting with the effort. My butt barely cleared the floor before London bridge was falling down. I placed a walker in front of the couch and tried to practice standing. After a minute or two, I would collapse back onto the couch, sweating and trembling. I did this series of exercises every day, desperately hoping they would work. This was not going to be easy. But I had a year to get there.
It was a montage in my head. Here’s Monica getting out of bed and downing a protein shake. Cut to Monica peddling the stationary bike. She’s struggling at first, and then BOOM! Wardrobe change and she’s really peddling fast now! Another quick cut and Monica is standing with the walker longer and longer! Now she’s pushing the walker aside and standing on her own. And finally: Monica walking down the aisle in a big white dress. A year of work condensed down to two or three minutes of inspirational screen time. That’s what the people wanted to see, and that’s what I imagined.
In reality, trying to rebuild muscle was an excruciating, microscopic process. My legs hurt all the time, but I wasn’t getting any stronger. Weeks in, I still collapsed after a minute of trying to stay upright with the walker. I had been to physical therapy innumerous times in my life trying to rebuild muscle. It had never worked. This time, I bargained, I was motivated enough to change the outcome. So I kept at it, holding onto my vision.
Wedding Dress Shopping
In September, my mom took me to shop for a wedding dress. It had been three months since the engagement, and I wasn’t feeling any stronger. Still, I was thrilled to be in a bridal boutique, surrounded by white lace and tufts of tulle. There wasn’t an accessible changing stall, so an employee stuck a chair into one of the larger changing rooms. I sat while my mom helped get the first dress over my head, tulle and beads pulling at loose strands of my hair.
“Okay, can you stand and I’ll pull it the rest of the way down?”
I took a deep breath and pushed up from the chair, one arm holding onto the back for support. My legs shook beneath me as she adjusted the gown around them. I stared at the floor, determined to stay upright. Now my supporting arm was shaking in protest. Hurriedly, she straightened from her crouched position and stepped away. I looked in the mirror.
The dress was undoubtedly beautiful. The white lace hugged my body in all the right places, making me look elegant and, well, bridal. But my attention didn’t stay focused on the dress. I met my own eyes in the mirror, and the person looking back at me was in obvious pain. My brow was deeply furrowed, my mouth a hard line. I didn’t look happy or elegant or bridal. I looked miserable. Turning away from my reflection, I saw my sister snapping a photo. When she was through, I collapsed back into the chair, spent.
My sister snapped more photos, and I played it off like I was being funny instead of completely exhausted. We repeated the process with four or five more dresses. I had imagined wedding dress shopping to be an exuberant experience. Instead, I was more tired than I could ever remember being. We didn’t find my dress. I went home and took a long nap. When I woke again in the late afternoon, I knew it was time to make a decision.
There is a story that my mom loves to tell about me. It’s basically family lore at this point. I was in seventh grade, and it was picture day. That morning, I had woken up with a terrible head cold, but I was determined to push on. I put on my new outfit–a navy blue velour sweat suit set (hello, 2002)–and went to the mirror to brush my hair.
“Monica…” my mom said cautiously as she appeared in the mirror behind me. She studied my bright red nose and runny eyes., “Honey. You need to go back to bed.”
“But, it’s picthure day,” I lamented through my stuffy nose.
“Look at yourself,” my mom said, directing my attention to my reflection while she stifled a laugh. “Do you really want your picture taken looking like this?”
My red nose was leaking snot, and my eyes were bloodshot and streaming. The pièce de résistance was my hair, a wild bush of undefined curls from a night of tossing and turning. I was a mess.
“No,” I sighed and went back to bed.
In the weakening light of my apartment, I thought about my reflection in the dressing room that morning, how pained and unhappy I looked as I struggled to stand. Did I really want to get married looking like that? It was true that when I dreamt of my wedding day, I was walking down the aisle. But I was also smiling, happy. The woman in the mirror that morning was upright, but she wasn’t smiling. Or happy. It seemed like I was going to have to choose. Standing and struggling or sitting and smiling. Looking at it that way, the choice really didn’t seem that hard.
Something Old, Something New
We went wedding dress shopping again in November. This time, I had a different plan in mind.
“We need to find one that looks good when I’m sitting and won’t get caught in my front wheels,” I announced in the car on our way to David’s Bridal. I took a deep breath before continuing. “I’m going to stay in my wheelchair.”
“I think that’s a great plan,” my mom told me, immediately on board. “In fact, I’ll even make you a wedding wheelchair!” I beamed at her from the back seat.
That day, when I tried on the dress that would be my dress, I didn’t try to stand up. Instead, I looked at my reflection from right there where I sat, and I smiled. The woman in the mirror was elegant, and bridal, and happy. This was how it was supposed to be.
Planning the wedding got more fun after that. Without the worry of trying to walk again, my mind was free to create a new dream. My mom did make me a wedding wheelchair. She wrapped the cushion and backrest in white satin and lace and glued pearls to the spokes and lace applique to the casters. It was a throne. My uncle built a ramp up to the stage where Alec and I would say our vows. On that stage stood two stools. Alec and I would both sit for the ceremony, eye to eye. As the plans came together, this new dream was becoming just as beautiful as the old one. More so, because this dream was real.
If my life was a movie, this part of my story would have a different ending. Montage Monica would have gotten strong enough to walk down the aisle. People would’ve wept at what an inspiration I was as those imaginary double wooden doors swung open. My real life did not fit into the narrative of disability on which I’d grown up, the narrative where a sick person gets better if they believe in themselves enough. In real life, progressive diseases don’t stop progressing because you really, really want them to. Muscles don’t rebuild themselves once they’ve deteriorated. A miracle cure isn’t presented to you in a vial in the nick of time.
And you know what? I’m glad. How boring would that life be? I hate that I spent so long trying to undo my circumstances instead of working within them. Battling my own body for so long had exhausted me. And the kicker was, I didn’t do it because I thought I would be a better person if I could walk. I did it to match some dream vision that I had seen played out time and time again on movies and TV.
The story was never a disabled person loving their body. The story was always a disabled person overcoming their disability. Or dying. That was the only road to happiness that I had ever been sold. Overcome or get out. I had never seen a bride in a wheelchair, happily rolling down the aisle. That was never a part of the stories I’d consumed. Until now. I was done buying that same old story. I was going to write my own.
Rolling Down the Aisle
There were no big wooden doors. Just a regular sized glass one. My music started–“Swept Away (Sentimental Version)” by the Avett Brothers–and I rounded the corner in my wheelchair. For all the changes, one part of the old dream remained: Both of my parents went with me down the aisle. I don’t know if people gasped or wept. Probably, they couldn’t see me very well. But I wasn’t focused on them. My eyes were lifted, looking at my husband, just out of frame. I was moving toward the person I loved more than anything in the world. How ridiculous that I ever thought it mattered how I got there.
At the reception, we didn’t do a first dance. Instead, we invited all the married couples in attendance to the dance floor. We then had the DJ ask couples to sit based on how long they’d been married, until the couple who had been married the longest was the last one standing.
I had a plan.
When Paul Simon’s “Still Crazy After All These Years” began to play, and all married couples were invited to the dance floor, I pushed away from my wheelchair and stood. Alec wrapped his arms around my waist, surprised. My legs began to shake almost immediately. But I held on. We swayed gently for a few moments.
“Allllllright, if you’ve been married for less than an hour, sit down!” The DJ’s voice boomed through the speakers.
I fell back onto my wedding throne, a huge smile plastered on my face. There. I had stood at my wedding and danced with my husband. As it would turn out, it was the last time I ever really stood. What a way to go out.
But it wasn’t the last time I danced. I boogied in my wheelchair all night long, unsure if anyone, ever, in the history of the universe had been this happy.
Someday, if Alec and I have kids and they look through our wedding album, they’ll laugh at our outdated clothes and hair. They’ll listen to us talk about the friends we miss and the grandparents they never got to meet. Maybe they’ll ask me why I had both of my parents walk me down the aisle. I’ll tell them the whole story. And they’ll see that on that day, their mother was stronger than she knew.