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Finding the Right Multiple Sclerosis Treatment

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PATIENT VOICES
¿Cómo Se Dice Spinal Tap? The Challenges That Come with an MS Diagnosis and Language Barriers

Medically Reviewed By Meredith Goodwin, MD, FAAFP
Crystal Bedoya_Como Se Dice Spinal Tap The Challenges That Come with an MS Diagnosis and Language Barriers

My mother, who only speaks Spanish, has had to navigate through language barriers in a foreign country and endure many hardships throughout her life. An unexpected one was figuring out life with her young daughter’s multiple sclerosis (MS) diagnosis.

After receiving a diagnosis of MS at 11 years old, the next two years were a roller coaster ride. At 13 years old, I was left paralyzed from the neck down because of a severe MS relapse. I felt like my world had collapsed and I didn’t know what my life would be like as a child navigating through what seemed like “adult problems.” My relapse was so bad that I was airlifted to Phoenix and placed in an ICU unit, where my three-month stay of torment, struggle, and resilience began.

It was up to me

One day, my doctors proposed to my mom that it was time for a spinal tap. “Como se dice ‘spinal tap?’” – “how do I say ‘spinal tap?’” – was the first sentence out of my mouth. I knew I needed to translate for my mother, but all the medical jargon was already hard to understand in English.

I immediately started panicking, of course. Regardless of how I was feeling emotionally or physically, I owed it to my mom or my parents, when both were present, to translate for them. My dad spent the majority of that time period either working or taking care of my younger siblings, so my mom and I were a dynamic duo dealing with battles on a daily basis.

They needed to know what was about to happen, so it was up to me to properly translate, despite the fact that English was my second language. I was constantly hoping I wasn’t interpreting certain medical terminology incorrectly. There were moments where a Spanish-speaking nurse or nursing assistant would try to help me and I will be grateful to them for the rest of my life. Sadly, I have encountered very few doctors that speak Spanish. This has been an added stress factor and constant worry I struggle with to this day.

Back to that hospital room. There I was, paralyzed from the neck down, trying to figure out what a spinal tap was, processing what was about to happen to me, and figuring out how to explain it to my mom as best as I could.

So, what truly is a spinal tap or a lumbar puncture? Lucky for me, I’ve had two of them done in my lifetime – and I hope and pray I never do ever again.

I finally learned that a spinal tap is a test used to diagnose certain health conditions like multiple sclerosis or serious infections. During a spinal tap, a needle is inserted into the space between two lumbar bones to remove a sample of cerebrospinal fluid. This fluid surrounds your brain and spinal cord to protect from any injuries.

Once I understood this, honestly, I was scared out of my mind. I couldn’t just run away and tell them no, but I didn’t want to do this. I translated as best I could to my mother.

A few days later, my mom was taken outside my ICU room; they didn’t want her in the room in case she would make me nervous or obstruct the care team from getting the spinal tap done. “Se la dejo a Dios que me la cuide,” she said in Spanish (“I leave her in God’s hands”), before leaving my room.

Unfortunately, the doctors started the procedure before I figured out what was going on. They had all agreed to hold me down so I wouldn’t move and cause the needle to stray during the procedure.

A spinal tap is as painful and as horrible as it sounds. In both my experiences, I did not get any sedation and I felt every aspect of it. Looking back at that first time, I remember screaming and crying for help and trying but failing miserably to free myself from the hold all of the doctors and nurses had on my body. I was frozen, paralyzed by my MS, my scary but faithful companion – and incapable of movement. It is a nightmare of a memory. It is trauma.

Taking the next steps

The doctors got helpful information from the spinal tap, and I vividly recall my neurologist telling me I would be in that hospital for three months. From small moments like being able to move a single toe, to big moments like taking my first steps again and feeling like a giant baby – all those milestones eventually led to me being able to leave that hospital walking with a walker.

When I walked out of the hospital, I truly felt invincible and so accomplished that I left it to myself to eventually learn how to walk without the use of any mobility aids. This was a collective win for everyone but I credit it entirely to my family. They were my fuel, my inspiration, and my motivation to prove myself wrong and learn how capable I am.

That’s why I fight

It continues to baffle me how my mom did it all. She had to have those heavy conversations and make those monumental decisions at times all on her own, without speaking the language, without interpretation resources that should have been available.

Our country is rich in cultures, backgrounds, and different languages and it’s still surprising that many people can’t communicate with healthcare professionals. Things continue to get lost in translation and access to care is such a struggle that many endure every single day. Unfortunately, I know people who have given up on the system that is there to help them – because it’s not accessible.

I personally continued to deal with the struggle of language barriers throughout my MS journey. I made it a goal to take Spanish classes to build my fluency in high school and university. This was a helpful way to improve my translating skills and make my parents’ lives easier as they managed my doctor’s appointments as well as their own.

To this day, it’s a heavy and stressful burden, having to constantly research and translate all of the medical terminology to my parents and hope I am doing it correctly. Healthcare is constantly changing so I try my best to keep up but there are times when I wish I could take a break.

This is why I’ll always fight for equal access to care, and help whenever I can. I can think of the many times I have seen and heard from my parents, friends, family members, and strangers as they struggle to communicate with their care teams. There have been times where I have had to translate simple sentences to elders in my Latinx community at doctor’s offices just so they can schedule appointments or get their prescriptions filled at pharmacies.

I think of those times when I struggled and my parents struggled; I refuse to accept that this should be the way it is forever. When I do help that one person struggling, in my experience as a Latina, they then respond with, “Hay hablas español mija? Muchas gracias” (“You speak Spanish, dear? Thank you so much”). These interactions forever fill my heart with so much joy and appreciation. I hope one day I won’t need to help in this way, but until then, I’m happy to play this vital role that has so much impact.

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Medical Reviewer: Meredith Goodwin, MD, FAAFP
Last Review Date: 2023 May 22
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THIS CONTENT DOES NOT PROVIDE MEDICAL ADVICE. This content is provided for informational purposes and reflects the opinions of the author. It is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare professional regarding your health. If you think you may have a medical emergency, contact your doctor immediately or call 911.