After Standing Still, Finding My Next Step

Beth Ullah avatar

by Beth Ullah |

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“The carousel never stops turning.” – the TV drama “Grey’s Anatomy”

At the 2019 European Patients’ Forum Congress in Brussels, which focused on patient involvement in healthcare, attendees were invited to write down a list of goals they wished to achieve in the next 12 months. After rolling my eyes, as I was still exclusively in a wheelchair and in the phase of thinking, “What could I possibly achieve confined to a wheelchair like this?” I still made my list. I found it the other day.

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I had three main goals:

  1. Pursue my medical writing career.
  2. Buy my and my husband’s first house and stop renting.
  3. Start our family.

A fourth, tentative goal was inspired by that same conference:

  1. Work with my MS nurse to help improve the MS community.

At the time, I had no idea how I’d go about this, but it seems as though life had its own plans: Last year, that nurse was awarded a grant to begin a multiple sclerosis (MS) website local to us, and she asked me to collaborate.

Finding my list felt like serendipity. I’ve met three of the four goals, despite feeling as though my life has been stagnant or on hold since my MS diagnosis. A realization hit hard — that for so long, I had defined success as working for a living, despite trying to make the best out of a profession that didn’t make my heart sing. I needed to redefine my idea of success.

It turns out that while my Congress goals weren’t all achieved in those 12 months, I have now achieved all but one: having children, which has turned out to be a much more complex journey than my husband and I had anticipated. So while my overriding feeling was that MS had put my life on hold, that was actually far from the reality.

The reality is life happens even if you don’t see it.

I still hold myself to my pre-MS standards, which may cause me to feel my life has been on hold (and which the COVID-19 lockdowns made worse). I’m actively working to adjust those standards. In one example, I sometimes stand and take a step before remembering I can’t move in certain ways. For a split second, my mind forgets.

The irony is that I wouldn’t have achieved my first goal if it wasn’t for the COVID-19 lockdowns. I wouldn’t have begun my master’s degree in neuroscience.

The world never stops turning, and life can’t be stalled. Even if you feel you’re stagnant today, I’ll bet you made some progress. Did you get dressed? Did you shower or have a bath? Did you write? Did you have a moment that brought joy to your heart? I would say that is a win. That’s what we can hope for.


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

Lynda M. Viet avatar

Lynda M. Viet

Dear Beth,

You seem young & wanting a full life could be in the cards for you. Personally my SPMS is still manageable, but I can tell you that I have been following all the research for the past 20 years & having worked In the MS Clinical Dept in Montreal till 2009, I have seen the researchers working very hard to find new medications and they went from maybe 5/6 Med. to more than 20 and there may be more to come. So don't despair, there might be a sunshine at the end of the road. Keep smiling. Sincerely, Lynda V.

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Nancy Rochelle avatar

Nancy Rochelle

Hi Beth
I find your columns so insightful, you have really helped me to understand the complexities surrounding MS, not only mental challenges but physical ones too, and how to navigate those.
Thank you
Nancy

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Jenny avatar

Jenny

Wonderful email, and story. Very encouraging as I have a habit of throwing away the bits of paper, of journaling when I get low. Not now xx
PS do keep writing when you can. Wow , neuroscience!

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Rebecca Taus avatar

Rebecca Taus

Beth:
Thank you for your article reminding us to look a little deeper. I must say keeping a positive attitude, although sometimes a challenge, will help us all beat MS. At 68, I still find myself dreaming of myelin regeneration. I keep articles on my desktop as they come out and I see it happening in the not-too-distant future. I have to stay healthy to partake in my nerve remyelination! I hope to be able to walk well when my children have grandchildren!

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Nada Zdrale avatar

Nada Zdrale

Thank you, Beth, for reminding me to stay active mentally and physically. Eating healthy and not drinking alcohol helps me to maintain my cognition and we all that a mind is a beautiful thing to waste. Cheers! Water, tea, or coffee are my favorites.

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