The Diary of Disabled Girl
Dammit...dammit...dammit! My panic echoed off the chocolate marble vanity, bouncing off its shiny gold fixtures and into a rising pile of lemon-scented suds. It had only been 2 short days since I had convinced my father to reluctantly pay a whopping $80 for a brand-new tuxedo. I wasn’t sure what hurt more now, the fact that I had wasted his hard-earned money or the sharp and familiar stings of humiliation and failure.
The platter-sized stain looked even bigger now in the wall to wall mirrors. Even through my blurry tears, I could see it staring back with scathing judgement. “What the hell were you thinking? A waitress, really? I continued scrubbing through the layers of stubborn marinara sauce, praying that no one from the staff or wedding party would walk in to find a defeated, and disabled teenager experiencing one of the most humiliating moments of her life.
How in the world was I ever going to have a job with this stupid disease? I could still see the look of concern on the guests' faces from earlier that evening. One woman had even declined my offer to pour her tea after noticing my uneasy grip on the pot handle. In concern for her own safety, she insisted on pouring it herself while throwing me a look that clearly stated “Girlfriend, you are not coming near me with that pot of burning hot water”
And she was completely right. I had no business thinking that I could be a waitress. Not with these clumsy hands and hazardous feet. I was a danger to myself and now I was a danger to others.
I wish I could say there was a time in my life when I felt “normal”, but there really isn’t. Some of my first memories include sitting on the number rug in my Kindergarten class and showing off my new plastic leg braces to friends.
I mean, it didn’t really seem to bother me back then. But as the years passed by, my confidence took on more and more hits. I was in 3rd grade now and needed a runner for softball. I was getting tagged out way more than anyone else on the team and my mom had finally decided to talk to my coaches. Easy fly balls were dropping right through my mit...and as much as my poor parents tried to oil, stretch and wear down that leather, it still felt like concrete everytime I put it on.
My most recent dance recital had been more stressful than exciting. I could only stay up on my tippy toes for 2 or 3 seconds now before my ankles gave way and dropped me back to my feet. So at the ripe old age of 8, I hung up my ballet slippers and retired. 2 years later, my cleats and mitt joined them in hopes that one day, I’d find my “thing”.
But despite the regular moments of disappointment, life was still pretty damn good. I had two incredible Puerto Rican parents whose lives and hearts revolved around me and my younger sister, Melissa. Despite not having any family history, Miguel & Eneida had been dealt powerball odds of having, not one, but both of their daughter’s diagnosed with Charcot-Marie-Tooth, also known as CMT, before the age of 4. All they had been told by the doctors was that their daughter’s hands and feet would progressively weaken over time and that there was no treatments or cure. Where many families could have fallen victim to shame, self pity and despair, my incredible parents decided to become overnight advocates.
1987
“I sent your photo to some people the other day” my mom said as she brushed my hair into a tight ponytail. “They want you to be the poster child for Long Island” “Mooommm, what? What does that mean, a poster child? “They want us to take photos at their events and help them raise money for a cure.”
Now, I don’t remember formally agreeing to this poster child thing, but I do remember that soon after that conversation, my family's life was forever changed. Every weekend, between 1987 and 1992, involved us traveling to some kind of fundraising event, sometimes even 2 or 3 in one weekend. And it wasn’t just taking pictures either, we were speaking in front of crowds of people, being interviewed on local news channels, meeting celebrities like Sammy Davis Jr. and Ron Darling. Sometimes we’d even put on impromptu lip-syncing performances at high school dance-a-thons (did I mention this was the 80s?).
They were some of the greatest years of our lives. One of the best parts of it all was the healing it provided for our family. Advocacy had quite literally turned my parents' pain into purpose while also building up my sister and I’s confidence. We were exposed to a world of passionate, generous and caring people. We grew up experiencing the importance of volunteer work, service and community. And we developed a deep sense of humility and gratitude for the challenges we did have because we now personally knew many families whose daily battles dwarfed our own.
But like all good things, they must come to an end. Melissa and I eventually aged out of our poster child status and into tweens with social lives. My parents still ran the local volunteer chapter as well as the annual telethon call center. Mom went back to working full-time and life was just busier.
1992
“Am I really not going to have to wear braces anymore?” I had anxiously asked this same question during every appointment for the past year, terrified of hearing a different answer.“I don’t see why not, kiddo. You’ll have all the support you need after we straighten you out.” Dr. Gruber said in his warm NY accent, reaching into his white coat pocket and pulling out a voice recorder to document his latest observations. He was a well-respected and kind surgeon with a full head of salt and pepper hair who never had less than 3 or 4 med students parading behind him, in and out of every room. He’d poke at my motionless and twisted feet inviting them to take a closer look while he used big words like atrophy and dorsiflexion.
It was early June of 6th grade when both of my leg casts were finally cut off. It had been 12 long and painful weeks of recovery. For the first 6 of those, the rigid white plaster had wrapped all the way up my thighs, stopping only a few inches from where my New Kids on the Block underwear started. This made showering and bathroom time loads of fun. For almost 2 months, my day mainly consisted of being carried from my bed to the bathroom and back to the bed. One weekend, we got hit with a nor'easter. My parents bundled me up as best they could, layering blankets over my legs and open toes before wheeling me outside onto the freshly shoveled walkway. My dad positioned me right up against the base of our snowman, handing me fistfulls of packed snow to slap onto the torso. I laughed as my sister did her ridiculous Christmas Story impression… falling back into the snow and flailing her arms as she attempted to get back up.
By Easter, I was using crutches to get around. It felt good to be vertical again. The air was blooming with new possibilities and it felt energizing to know the most difficult days were now behind me. Dr. Gruber had successfully fused and straightened my floppy, crooked feet into a 90-degree angle just as promised. My new mission that summer was to learn to walk again in time for my first day of Junior High School. I had already begun clipping out back-to-school looks from my Teen Magazines; plaid skirts and grungy floral dresses…you know, the kind that Drew Barrymore and Courtney Love wore— complete with white tees and shiny Doc Martin boots. No more braces meant, I could finally bear my legs without feeling like some kind of freak…I would finally fit in.
1993
The bell rang for home economics class. “Shit” I mumbled under my breath as I scurried faster past the cafeteria. I was going to be late again. The halls were now empty except for a few of the ‘bad kids’ loudly and obnoxiously trailing behind me. They were the school misfits, regularly getting kicked out of class for talking back to teachers and causing chaos… and for some reason this made them even more popular. I had just turned the final corner of the Arts hallway when suddenly I noticed an abrupt and eerie silence. Instinctively, I turned my head... my heart sank. There, no less than 12 feet behind me, was the leader of the pack, Kenny, doing his best impression of my awkward gait, his groupies cupping their mouths laughing breathlessly. I went home in tears that day and told my parents that Dr. Gruber was an asshole and a liar. I needed my leg braces back.
2009
Devin...how are we supposed to get anywhere if you don’t let Mommy buckle you in? By now we were both laughing so hard, that no sound was coming from either one of us. Another 30 seconds of this and we’d both be peeing ourselves, which would have been much more acceptable for a 2 year boy in diapers than his 29 year old mother in yoga pants. We went through this sequence pretty much every time we had to go anywhere. I could rarely get a full grip on his carseat buckle which left me no choice but to assist with my mouth. This easily should have been a 10-second operation except for the fact that Devin was the most ticklish baby I had ever known. The minute my face pressed up against his belly he was squealing and pulling my hair for mercy, which would only send me bursting into laughter and him howling even louder.
Motherhood had found me early in life. I had fallen head over heels with the first guy who had asked me out in HS and we married the summer after my graduation from the Fashion Institute of Technology. Originally, I had set my eyes on becoming a fashion designer but that dream deviated into a bachelors in Interior Design. Sometime during my senior year of high school I had realized that just because my hands were able to draw beautiful runway designs, it didn't mean they’d be able to actually sew them. Still, I had found much enjoyment and challenge in my new major. The campus was small and for the most part, accessible. I was thrilled to learn that my CMT qualified me for campus housing despite the fact I was only a 45-minute train ride from home. I’d finally be able to experience living on my own without having anyone trying to do everything for me.
2016
“You’re Helpless!! I’m out killing myself working 2 jobs and you’re home designing stickers and giving your time away like we’re fucking millionaires.” “Actually, I’m raising our kids, running half the business and the bulk of the household chores, or did you forget those small details? And, I’m volunteering for an organization that’s trying to cure my disease...not that you care to notice anyway!” “Here we go again, how about getting a real job like every other woman I know?!!” “I’ve broken it down a million times, by the time we pay for daycare, there’s not going to be anything left!”
We went back and forth like this for years until it was clear that the marriage was going to be the end of both of us. At 36 it had become blatantly clear that the relationship had done more damage to my mind and body than my actual disease. Piece by jagged piece, we resentfully sorted through 20 years, jumbling together coloring books, bills and family photos from happier days. The forms for my upcoming SS Disability appointment sat on top of the mounting pile. My date had been set for April 17th. I felt both terrified and relieved at the same time.
2019
“I got you, babe. Stay right there, I’ll step on first and help you in, ok?” My boyfriend, Jason carefully postured himself, legs wide as he raised his long arms to form 2 human railings. I grabbed faithfully onto each, dropping down onto the black lacquered cabin as I let out an audible breath of relief. “Good job, birthday girl'' he said as I laughed and straightened out my short green summer dress. I could have fallen headfirst into that water and still, I would have come up smiling ear to ear. My eyes widened as they desperately attempted to take in the overwhelming beauty around us, sporadically bouncing from each intricate carving of the bow and across the sparkling horizon of ancient balustrades, gothic arches and marble balconies. A string of deep red celebratory pompoms danced along each side of the gondola, as we pushed off from the Venetian pier and into the warm June air. “Put your feet up here” Jason motioned, “let’s get some quick shots of your braces in this light.” I raised both legs up onto the wood platform and turned them into the setting sun for optimal framing. They had been sponsored by a German orthotics company, and part of my job, aside from attending our annual neurology conference with my colleagues, was to test and photograph them across our 10-day tour of Italy (I know, tough gig, right?) A few months back, when it was time to select a color from the massive chain of vinyl chips, I had stopped instinctively on this particular one. At first, it appeared as a dull and boring grey until, that is, you held it in direct sunlight, in which case it became an iridescent display of every color at once, brilliantly transforming my legs into some kind of magical rainbow show. I turned to Jay and said teasingly, ‘Aren’t they beautiful? He snapped one more photo and then looked up at me and said, “yes, you are.”
2020
“Low battery” the notification startled me, instantly snapping me back into my now dim bedroom. How long had I been online? The growing sting in my eyes swiftly answered, “too long.” I closed them, rolling my heavy head from side to side until my stiff neck cracked with relief. Dozens of red dots still imprinted in my mind, each representing nearby cities and growing clusters of confirmed cases. “That’s enough for now,” I said, pushing up from the desk and reaching for the cord to my battery pack.
I walked over to the far side of the bed where my headphones still sat from the previous night. The word “Bose” now tinted with dark hues of auburn from the window above. Outside, the yard had been covered in a fresh white blanket of snow, all except for the inground pool whose rigid lines had now been perfectly curved and softened into a small crystal pond. Not exactly the scene I had pictured for the “end of the world.”
I smoothed out the thin purple yoga mat underneath my feet, regaining my balance as I scrolled through my playlist for my go-to track and pressed loop. Spacing each foot along the edges of the mat, I placed my hands down flat, leaning into my palms as they brushed against the tips of my sneakers. All those torturous years of being stretched in PT had paid off. At 39, I was now half human, half pretzel. I’d often credit my abnormal flexibility with keeping my bones intact from my hundreds of falls. One year, I counted 62. Many times I’d laugh them off, saying things like “I don’t break, I bend” to comfort Jay and the kids.
This new storm felt heavier though. This storm was a global one, a Pandemic. I unclenched my jaw and inhaled until each crevice of my lungs were full. The sea of questions and uncertainty began to fade into the tiny bumps of the mat in front of me. My attention now focusing on my tingling fingers and the lavender letters printed above them, “Gaiam”. After years of staring at this odd word, I had only just recently learned it’s greek translation - “I am mother earth.” I exhaled as a tear dropped in between my fingers. My heart felt heavy for what was to come but also grateful for this familiar and sacred space I had found so many years ago. “The melody and lyrics began again...
Hold
Hold on
Hold onto me
‘Cause I’m alittle unsteady
A little unsteady...
More about Estela:
Instagram: @stel_lugo @embraceit_podcast @cmtwegotthis
TEDx: https://www.youtube.com/watch?v=1MXVoLLMzBk
Hereditary Neuropathy Foundation: www.hnf-cure.org