Making It ‘Through the Looking Glass’ After MS Diagnosis

Beth Ullah avatar

by Beth Ullah |

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Winston Churchill once wrote, “I pass with relief from the tossing sea of Cause and Theory to the firm ground of Result and Fact.” This very much sums me up as a person.

It was also how I felt when I was diagnosed with relapsing-remitting MS 10 months after the first episode of feeling numbness in my face. The initial relief at finally having an answer was palpable.

That relief lasted only until I realized I’d have to learn to live with a lifelong illness with no cure. This was one of the hardest things to come to terms with; I was 26, newly married, and suddenly, I was hit with this curveball called MS. As a scientist, losing control of my life was the hardest thing to deal with. I like control, order, and answers. But after diagnosis, it felt as though I had lost all of these things.

So, what did I do? I used my friend science to process and understand this hurricane that had ravaged my life. I researched, read articles, and even wrote some. I learned the fundamentals of what MS is and how it works. This gave me a sense of calm and control. If I could understand more about MS, maybe its messy and unpredictable nature would be easier to handle.

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What came next really challenged me and pushed me to the limit: I began relapsing every few months. It happened so frequently that the relapses began to blur into a single one. I could no longer tell when one relapse ended and another began. Due to the aggressive nature of what I call my “Hurricane MS,” I was offered the disease-modifying therapy Lemtrada (alemtuzumab).

The whole process took about 18 months, from diagnosis to referrals to the MS specialist team, and then to an MS specialist consultant, and finally to treatment. During this time, I lost my eyesight, lost all sensation from my chest to my feet, and lost the ability to stand for more than two minutes, which culminated in paralysis from the waist down. “Hurricane MS” had left me battered and broken.

Until Lemtrada, that is.

Lemtrada did what it said it would on its packaging, and more. I had genuine concern about how my mobility would be affected over time. Would I walk again? Would I even be able to wash my own hair again? At that point, I could barely roll over in bed by myself. The short answer to those questions was a resounding yes.

This happened with a little help from steroids and plasmapheresis, or plasma exchange. When steroids failed to work against the paralyzing relapse, I was admitted to the hospital to have my blood cleaned of all the nasty, toxic remnants left behind. More on that later.

But it wasn’t just my body that had been knocked sideways — my mind was, too. I’ll never forget something my MS nurse said at the time: “Beth, you will make recovery. Right now you’re firefighting. It’ll be OK.”

The shock of my new husband having to adapt from life partner to full-time carer without warning took a mental toll on both of us. Our lives had become a distorted reflection of what we’d envisaged. Once the initial firefight was over, it took even longer to heal and discover our new identities after “Hurricane MS.”

Fast-forward three years, and the clouds have parted, and the chaos and confusion have begun to dissipate. The sun is shining through.

I’ve always believed that things happen for a reason. For a long time, I couldn’t see past the cruelty of being diagnosed with MS at 26, as well as the pure torture of its aggression. I’ve learned that one can never have clarity to see the silver linings while in the moment. Only afterward can I now say that it happened for me.

When MS forced me to leave an industry I’d happened into, I no longer had an excuse to avoid following my passion for science, particularly neuroscience. And no, that’s not a consequence of my diagnosis, I first dabbled in it during undergraduate research in 2012. The irony is not lost on me! I believe I wouldn’t be doing what I love without having experienced MS.

I’ve shared the grizzly extent of the disease’s effect on me not to cause worry or gain sympathy, but rather to highlight that despite experiencing some deep lows, I’ve made it out the other side. I’ve come through the looking glass.

I truly hope my column will provide a ray of hope and understanding to anyone affected by MS. If it helps just one person, my day will be made.

***

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.

Comments

Susan Moore avatar

Susan Moore

Beth - Consider your day made! XO

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Yvonne Ashman avatar

Yvonne Ashman

Brilliant, moving and inspirational. Thank you...

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Tina Youssef avatar

Tina Youssef

I needed this today, thank you for sharing your story

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Ginny Fasanella avatar

Ginny Fasanella

God bless you and your Angel's guide and protect you. Your article has helped me. You are a brave woman and your husband is a God sent.

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Abbey Turner-Watson avatar

Abbey Turner-Watson

To quote:
"What doesn't kill us, only makes us stronger.".
From me, thank you, your day is made.

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Beth Ullah avatar

Beth Ullah

Thank you so much all. It was a pleasure to write it. I'm so excited to write more.

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Tom Anderson avatar

Tom Anderson

I am glad you've found some relief to and clarity about MS and have confidence to move forward. Do not forget in your future writings to be honest, even brutal, in your descriptions, so that you may transfer honest psychological wisdom and truth to those who have not accepted it yet. You can't beat MS with attitude, hope, and being a “warrior”, alone. You might get those things, like you did, after, a good medical experience and a good MS Doc. Lemtrada is not for sissies and carries a lot of sacrifice, especially in these covid days. More experts believe today that reconstitution therapy is the way to go from the onset, in order to have a long standing chance for something that resembles a “cure”. I hope it all works out, and good luck to you. You have an actual fighting chance to beat the physiological MS.

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Syazwani avatar

Syazwani

I was diagnosed at 26 too. Was just married a month before diagnosis. Turned our life topsy turvy, I'm quitting teaching soon (now I'm 30) since my employer can't deal with my disability and seniors are just as mean. But on the good side, I have more freedom to do freelance now. Started with Rebif, but it failed on me 2 years after. Almost had to do Plasmapheresis. Hope everything goes well for you! I'm always singing, this is my fight song, take back my life song. May you find the perfect song to push you forward even more!

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