Dancing and music have brought me great joy in times of turmoil and frustration. As I have dealt with my multiple sclerosis diagnosis for almost 20 years, dancing — a skill I picked up from my mami, quinces, music videos, and pure freestyling — has been a source of relief. From examination rooms, to hours-long infusion appointments, to a much-needed 2 a.m. solo dance session in my room, I dance to unwind and shake away the all-consuming stress and worry — and Latin genres like reggaeton have been particularly therapeutic.
I first heard about multiple sclerosis as a kid. At 11, I was diagnosed with MS, an unpredictable disease that affects your central nervous system. As a result, I have, at times, lost the ability to walk, see, or brush my hair — leaving me completely incapable of being independent. It always happens out of the blue and the severity of it quite literally destabilizes me. Sadly, it has been a constant, overwhelming reminder that my life and responsibilities are drastically different from that of my friends and family.
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Being diagnosed with such a scary disease was even harder because my parents had never heard of it, and I remain the only one in my close circle with MS. As the daughter of Mexican immigrants who only speak Spanish, it also meant navigating language barriers on my own. Having to serve as their interpreter was another kind of childhood trauma I continue to process. Nonetheless, my parents and I tried to make it work as best as we could. We dealt with uncertainty along with many other challenges, like lack of proper access to care. We traveled to different cities hours away from my home in Arizona to see specialists who attempted to understand my aggressive MS diagnosis and help me with a proper course of treatment. This was my reality starting in middle school and continued through high school and college. From puberty, to starting new schools, to applying to college, I essentially attempted to figure out how to exist with a chronic illness at different stages of my youth.
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"I dance to unwind and shake away the all-consuming stress and worry."
Crystal Bedoya
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With doctor’s visits constantly interrupting my childhood, I learned to take advantage of any opportunity that comes my way, to enjoy myself, and live in the moment. I try my best to indulge in spontaneous adventures like going to concerts, especially those where I have plenty of chances to dance.
Unfortunately, my ability to see my favorite artists en vivo y a todo color decreased with the pandemic. In 2020, my MS progressed; I lost my mobility, and I had to take new medications that ultimately left me immunocompromised. On top of the lifestyle shift brought about by the pandemic, I also have to take extra precautions to avoid infections or more serious symptoms. My disability has drastically changed in the last three years, bringing new obstacles. For example, I now actively use an indwelling urinary catheter to help empty my bladder after an MS relapse caused severe nerve damage, impacting my bladder and kidney’s capabilities. Although it does make things somewhat easier, I am in a constant state of discomfort. Nonetheless, I adjusted to this new addition and have made it work for the last couple of months.
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One moment that marked a turning point came in April 2023 when a friend invited me to a Rauw Alejandro concert, a perfect time to finally live a little and experience some aspect of normalcy. Since the start of the pandemic, I have felt isolated, constantly struggling with my mental health, stressing about keeping myself healthy while being immunocompromised, and quite honestly, feeling left behind.
From scheduling my doctor’s appointments and medical procedures so they didn’t overlap with the concert date to selecting an outfit that still made me feel confident but worked with my catheter, I literally counted down the days until I got to see Ra-Rauw; it was that serious. His music hypes me up, teleports me, motivates me, and makes me feel like things will somehow be normal again — whatever normal is at this point in my life with a chronic illness.
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"His music hypes me up, teleports me, motivates me, and makes me feel like things will somehow be normal again — whatever normal is at this point in my life with a chronic illness."
CRYSTAL BEDOYA
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When the day finally came, I honestly felt like I was coming up for air after years of drowning. I asked another one of my close friends to accompany me to the concert, and she made the experience so special and comfortable. As we got ready, she truly made me feel like we we were back in high school when we would party en los antros de Mexico — a unique border town experience full of thrill and unforgettable moments.
Driving to the venue, Rauw blasted out of her Nissan sedan speakers; we were ready to have the time of our lives. Once we made it to the venue and to our seats, I was in a state of disbelief that the whole thing was actually happening. I managed to make it there, a catheter bag strapped to my leg; I felt beautiful for the first time in months.
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As soon as he stepped out on stage, I danced my little heart out and sang until my lungs allowed me. My friend and I wore KN95 masks for the entire concert, which made me less anxious. I was so full of joy I forgot I was wearing my mask the whole time. I was beyond ecstatic, singing some of my favorite Rauw songs (when “Tamo En Nota” played, I transcended to a different galaxy; I swear!) and had the chance to hang out with my amazing group of friends. It’s a night I will never forget and still think about to this day.
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"One good night of dancing is restorative and makes my heart happy and full."
CRYSTAL BEDOYA
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For me, living with multiple sclerosis has been a constant headache, with a steady stream of curveballs that have affected every aspect of my day-to-day life. I have been dealing with this responsibility and what, at times, feels like an altered reality since I was 11. I sometimes struggle with dissociation because of it. But at the end of the day, dancing and music, as well as my friends and family, have given me the ability to live in the present. One good night of dancing is restorative and makes my heart happy and full.
While I’m still not comfortable going to the club, I’m taking baby steps toward that. In the meantime, you can find me dancing whenever and wherever I can. I might still struggle with embracing the good moments — especially in the last few years — but dance continuously pulls me out of funks. As I face uncertainty and change, I’ll dance through it because when I get to dance, I feel free.
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