Recovering the Parts That MS Stole From Me

Beth Ullah avatar

by Beth Ullah |

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“Who in the world am I? Ah, that is the great puzzle.” — “Alice’s Adventures in Wonderland,” by Lewis Carrol

Jan. 9 was my 31st birthday. I remember looking outside, watching the low January sun glisten on the frosty ground as its orange haze thawed the earth.

I liken this to my journey with multiple sclerosis. As the morning sun began to thaw the frozen ground, it struck me that this image is a perfect representation of how I’ve been feeling lately. I am finally beginning to feel like I’m regaining the parts of myself that MS stole from me like a thief in the night.

The struggles that waltz hand in hand with MS highlight the meaning behind the cliché “new year, new start,” which offers a promising future to accompany a brand new year. While I generally dislike clichés, I am rather fond of the hope this new year brings. This year, I aspire to focus on the silver linings and the positives.

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An open-minded start

I love the inspiration and the hope that the idea of a new start brings with it. I take from it the lesson that I should open my mind to new possibilities and challenges.

I’ve previously written about being a scientist at heart, and I don’t think that will ever change. But I wish to share something else with you that you may not know about me: my creativity.

I’ve decided to dedicate 2022 to exploring this part of me. I already feel as though I’m regaining some of the confidence and strength I lost when I was frozen in time battling MS and struggling with the most basic daily tasks, which doesn’t leave room for anything else.

If you’re familiar with Maslow’s hierarchy of needs, you’ll understand what I mean. Psychologist Abraham Maslow introduced this tiered concept of human needs that states that to achieve a fully rounded life, one must secure one level of needs before advancing to another. Creativity, he stated, falls under self-actualization, which is the final tier.

So, I’m dedicating this year, my 31st year of life on this planet, to creating. I wouldn’t call this a resolution per se, but rather more of a rediscovery of who I used to be. Last year, I began with writing. This column was the first piece of the puzzle to click into place. Next, I’ve reestablished my journaling and creative writing, which were some of the first things to fall by the wayside when the MS symptom of fatigue reared its ugly head.

I also plan to immerse myself in music and photography. Rediscovering the passion in a beautiful song or a breathtaking photograph is like nothing else.

Finding my voice

I feel the most in tune with the world when I use my voice to make music. When my MS began to take hold, my inspiration for singing plummeted. I always used to sing in the shower or while cooking the evening meal, but then it felt as though MS had slowly taken my voice away. I used to be involved in the choir at school and took singing lessons for several years. On a quest to rekindle this talent, I have discovered a friend who also wants to dust off his guitar strings. My lost inspiration has been reborn.

Photography, in contrast, is a brand new venture. Aside from casual cellphone photographs, I have no prior experience. I’ve always been interested in it, but having started it as a hobby at the dawn of my MS, sadly it, too, fell by the wayside.

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“Through the Wilderness.” (Photo by Beth Shorthouse-Ullah)

In the song “Amazing,” the band Aerosmith sang, “Life’s a journey, not a destination.” I don’t know where these new ventures will lead, but it doesn’t matter. All that matters is that the little parts of the puzzle are falling back into place, and I’m reigniting the fires of passion that MS had extinguished. It is both exhilarating and comforting. It feels like I’m coming home.

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.


Teresa G. Melendez avatar

Teresa G. Melendez

Good evening, Beth. I enjoyed your column and can certainly appreciate your "recovery" of things taken from you by this disease. I am in a similar state of mind! It sounds like you're off to a wonderful and productive new year and I wish you the best!

Tom Anderson avatar

Tom Anderson

Hello again Ms Ullah- Happy Birthday and Happy New Year. You touched on a couple of things very familiar to me, so I thought I’d comment. I’m 64 now, and was 31 when in graduate school, on my way to becoming a licensed psychologist, and, forced to add MS into the mix of “how am I going to do life”? Public perception, of me as an organizational psychologist, and making recommendations in group settings, had already been in the mix of my skills and was to be challenged even more.

You cite Maslow, and he described learning and personality formation as sequential and not easily moving forward towards fulfillment when one is stuck. To have to go back to resolving safety, belonging and acceptance issues can easily distract one from what they want to otherwise be doing. That is, the “mix of life” can get difficult when thrust back into those concerns which for most of us, were resolved long ago.

We each have to navigate our own unique experience, with or without MS. It’s just that MS makes one do it again, and perhaps again, and even perhaps again. Being “aware” (so to speak), can help one regain focus and move forward to a new day, which you imply.

I saw Aerosmith in a concert about 1974 (Dream ON!). I always enjoyed music. In 1995 I had to temporarily use a wheel chair to make it easier getting around, and my hands and head shook quite a bit. As those issues began to resolve, I started singing Karaoke at the local bar. It was a great way to overcome fears about public perception.

So yes, Maslow and psychology, music and singing, seeing a new day, all played a part in putting my pieces back together again too.


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