Unraveling my ‘authentically human’ multiple sclerosis story

My adolescent years can be characterized by a series of naps, long-lasting migraines, always being sick, and never being able to donate blood, which my family and I never understood. My journey with multiple sclerosis (MS) started long before my diagnosis in 2016.

Let me set the scene of my first neurological episode.

Sometime before Easter in 2014, I was in an introductory-level biology class as a 14-year-old high school freshman when I lost vision in my left eye. At first, I thought there was just something in my eye, but it turned out to be much more serious. Before I carry on, I want to acknowledge the drama queen in me. I used to complain about anything and everything, so my family was numb to my hysterics.

It took some convincing, but I finally found myself in an eye doctor’s office. My vision loss was above their pay grade. I was referred to two different eye specialists, but my vision loss seemed to be above their pay grade, too.

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Many eye exams and referrals later, I was introduced to the world of neuro-ophthalmology. By this point, I was drained, scared, and sad because nobody had been able to give me a concrete reason as to why I couldn’t see out of my left eye. My neuro-ophthalmologist ended up diagnosing me with optic neuritis.

I recovered the vision in my left eye — mostly — with a high dosage of steroids. (I was taking about 13 pills four times a day.) But after the episode ended, my doctor told me that I could potentially lose my vision again one day. What a pleasant thought.

Here we go again

Sure enough, I lost vision in my left eye again during my senior year of high school. I found myself in the same chair in my neuro-ophthalmologist’s office and was prescribed the same dosage of steroid medication. At that point, I was told that I might have multiple sclerosis, but it needed to be confirmed by an MS specialist.

My mom began researching the world of MS, though I was mostly focused on senior-year festivities. I was eventually referred to an MS specialist who confirmed my diagnosis around Thanksgiving of 2016. All of the symptoms leading up to my diagnosis, including migraines, low vitamin D levels, and chronic fatigue, began to make sense — but why had all of my episodes occurred around major holidays? Weird.

Almost 7 years later

So, who am I? My name is Desiree (or, with fancy French spelling, Désirée) and I am a 20-something living in Austin, Texas, though I was born and raised in San Antonio.

Desiree Lama smiles at the Audubon Aquarium in New Orleans. (Photo by Manuela Lama)

My formal introduction would go as follows: I am a PhD student at the University of Texas at Austin studying educational psychology with a specialization in human development, culture, and learning sciences. I’m also working on a master’s degree in quantitative methods, or fancy statistics. I obtained a Bachelor of Science and Arts in human development and family sciences at UT Austin in the fall of 2021. My research mainly revolves around creating inclusive initiatives for disabled, queer students of color.

My informal introduction would go as follows: I am just a human trying to figure out this life one day at a time. I am an avid lover of sharks, cats, and clothes.

Through this column, I hope to portray what it’s like to live as your most authentic self, because after all, that’s what life is all about. We shouldn’t have to put on a facade every day, hide who we truly are, or conceal the difficulties we encounter, especially when living with MS. As I like to say, life is captivatingly burdensome, and I hope you all join me on this journey.

XOXO,

Desiree (or, with fancy French spelling, Désirée)

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.