When My Legs Forgot How to Listen”: A Retrospective Interview on Living with Multiple Sclerosis

 

Interview Transcript:

(Recorded as part of the “Living with Invisible Illness” retrospective series.)

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Interviewer: Thank you for joining us today. Could you start by sharing when you first noticed something was… off?

Interviewee (Sara Malik, 37):

It began with what I thought was just exhaustion. I used to work long shifts as a nurse — twelve hours on my feet, running from ward to ward. So when my right leg started feeling heavy, almost numb, I brushed it off. “Fatigue,” I told myself. “It’ll go away.”

But it didn’t.

A few weeks later, I dropped a cup of tea. My hand just— let go. No warning, no pain. Just this strange disconnect between my brain and my body. That’s when I knew something deeper was happening.

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Interviewer: What happened next?

Sara:

It was slow chaos. The symptoms came like flickering lights — sometimes I’d wake up feeling fine, other days I’d struggle to walk straight. My vision blurred on one side, and I started seeing double. I remember one night trying to read a medication label and realizing the words were splitting in two.

At first, doctors thought it might be stress or even anemia. I went through endless tests — blood work, MRIs, nerve conduction studies — until finally, the neurologist sat me down and said:

“Your scans show demyelination. It’s Multiple Sclerosis.”

The words echoed. I didn’t know what “demyelination” even meant.

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Interviewer: How extreme did it get at its worst?

Sara:

The relapse that came a year later was the hardest.

I woke up one morning and couldn’t move the lower half of my body properly. My legs felt like sandbags. I had to use a walker for months. I lost sensation in my fingertips, so simple things — buttoning a shirt, typing — became like solving a puzzle blindfolded.

I cried in the shower the first time I dropped the soap and couldn’t bend to pick it up. It wasn’t just physical loss — it was a loss of identity, independence.

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Interviewer: That must have been incredibly hard. How did treatment begin for you?

Sara:

The first line of treatment was high-dose corticosteroids during relapses. They helped calm the inflammation but left me feeling jittery, sleepless, and bloated. Then came disease-modifying therapies — I started with interferon injections. They were meant to slow the disease progression, though the side effects were rough: flu-like symptoms, muscle aches.

Eventually, I switched to an oral medication that suited me better. Alongside that, physiotherapy became my anchor — re-teaching my body to trust itself again. Yoga and mindfulness weren’t just buzzwords; they became survival tools.

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Interviewer: Looking back now, what do you think helped you cope the most — medically or emotionally?

Sara:

Honestly? Acceptance. It didn’t happen overnight. For years, I lived in denial, trying to outrun the diagnosis. But MS doesn’t like being ignored. It taught me to slow down, to listen — to my body, to my emotions, to life.

My support system mattered too. My husband learned to give me space without pity. My daughter would draw pictures of “Mom’s strong legs” and stick them on the fridge. Those small gestures pulled me through the dark days.

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Interviewer: And today? How are you doing?

Sara:

Stable, mostly. I still have flare-ups, especially in the heat or when I’m stressed, but I’ve learned my limits. I walk unaided now, though with care. I’ve gone from seeing MS as a sentence to seeing it as a syllabus — something that keeps teaching me patience, gratitude, and resilience.

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Interviewer: If you could give one message to someone newly diagnosed, what would it be?

Sara:

Don’t let fear write your story. MS changes your body, yes — but not your worth, not your dreams. Learn the rhythm of your illness, but don’t let it define your song.

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Author’s Note — “From the Echoes of Resilience”

What Sara shared isn’t just about illness; it’s about rediscovering agency in the body’s betrayal. Her story is one among many, but it reminds us — healing isn’t always a cure. Sometimes, it’s the courage to keep showing up.