Originally posted on Multiple Sclerosis News Today
I was diagnosed with relapsing-remitting multiple sclerosis at 17 years old, during my senior year of high school. At that time, the diagnosis was the least of my worries because my top priorities were senior year activities and college preparation. The truth, however, was that I didn’t comprehend what a multiple sclerosis (MS) diagnosis meant.
Before an MS specialist confirmed my diagnosis, I was told by a neuro-ophthalmologist that I might have MS because I’d experienced two episodes of optic neuritis. This specialist didn’t explain what MS was, but told my mom and me to do our research and return with questions.
After this appointment, I Googled only the definition of MS, and I didn’t understand what I read. I shortly gave up my research because of its complexity and, partly, because of the fear it stirred in me. My mom, however, took a deep dive into the intricacies of MS and became my most prominent advocate.
Over the weeks leading up to my follow-up appointment, my mom went down numerous rabbit holes to understand what was happening to her daughter. She wrote down every question, comment, and concern she could think of to ask my neuro-ophthalmologist. My mom was my voice during my follow-up appointment because I still hadn’t fully processed my new reality.
Desiree Lama, left, and her mom, Manuela Puente Lama. (Photo by Julia Gomez)
‘Independent’ at 18
About a month after I was formally diagnosed, I turned 18, which here in the United States opened up a world of legal responsibilities and protocols that weren’t familiar to me. Primarily, I had to adjust to the fact that my mom was no longer expected to speak to doctors and insurance companies on my behalf. I found that a challenge for many reasons — but mostly because I didn’t understand the complex jargon that dominated those phone calls.
In addition, I wasn’t accustomed to needing to give my consent for letting doctors speak to or in front of my mom and having her accompany me in the room during appointments. I remember feeling extra-fearful because this new system felt isolating and lonely. While I understand the necessity of consent, it felt unfamiliar and distant from the relationship my mom and I share. To this day, I tell her everything and anything.
Although turning 18 meant I was considered an adult, I didn’t feel that way. I still needed my mom to be my voice, and she did just that. Even all these years later, I’ve consulted my mom during every decision I’ve made because she provides comfort and support. Throughout my MS journey, my mom has been my rock and lifeline.
We share a sacred bond, and I could never thank her enough for supporting me through the most difficult times in my life. My diagnosis and every moment since have been a lot less daunting with my mom by my side.
Whenever I’ve needed her, even when I’ve insisted I’m OK, she drops everything without hesitation to be with me. My mom has shown me the unconditional and unwavering love of a parent. She became my voice when I couldn’t find my own.
