The disability community saved me as I battle multiple sclerosis

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A few weeks ago I woke up to find that my left arm, hand and leg were not working as usual. He didn’t let go. The left side of my body feels what I would describe as static, a blurry noise even. It’s not just a weird feeling though; my limbs are much weaker.

When I’m able-bodied, as I usually am most of the time, my fingers fly over a keyboard. I take my 20 month old toddler and put him on my left hip. I’m left-handed and like to put my thoughts on paper. Right now, I can’t do any of that, at least not without paying a heavy price for it later.

I am Shannon Rae Green, audio editor and producer for USA TODAY, and I have multiple sclerosis (MS). Welcome to this week’s This Is America, where we examine my experience as a member of the disability community during Multiple Sclerosis Awareness Week.

But first: The race and justice news we read this week

MS rears its ugly head

I was diagnosed with relapsing/remitting MS at the end of 2016. I immediately took medication and started seeing a neurologist, and it worked well for me. MS presents differently in each person who manages it. For me, relapsing/remitting MS means that I can lose some abilities, experience some symptoms, but then, like magic and with the right treatment, I feel what I felt before.

When a relapse occurs, it is always unexpected. After dusting myself off under a new reality, I adapt. My right arm and my right hip hold heavy things (like my sweet kid).

Currently, I avoid handwriting and typing, so I use dictation on my phone and laptop instead. I try not to tempt myself to fall into my usual way of doing things because it causes me pain. Also, I can burn out too soon if I don’t do things differently. My husband, my son and my colleagues need me to be there, and I want to be there for them right now!

It’s like that when your nervous system can’t do its job. I feel out of control and very exhausted as I am not as strong as usual. Doctors call it fatigue, which is known as a classic and treacherous symptom of MS. I respond by working around it. I’m testing new muscles, and even new neural pathways, so I can do the things I love: writing, working on audio stories, texting friends, playing with my son.

March is MS awareness month

The National MS Society describes MS as “an unpredictable disease of the central nervous system that disrupts the flow of information within the brain and between the brain and the body.” Many of us have experiences with a temporary disability. The United States Centers for Disease Control and Prevention postulates that one in four people in America is disabled.

Over the years, I slowly realized that I belonged to the disability community. With even more thought, I found that I’m proud of it. I can’t type like I normally do, at least for now, but I figured out how to write so I could share this post with many people. It’s a gift.

I had the pleasure of learning from other people with disabilities or living with a chronic illness. Here are my favorite lessons and advice from these people:

  1. They aim to focus on what they can do or how to adapt to work around what they can’t.
  2. They allow themselves to feel their true feelings (frustration, for example) and rely on others in their community to process these emotions.
  3. They agreed to ask for help. Both come from a medical team (physical and mental support), but also from their loved ones, people they date, close friends, family and co-workers.

These are all ways of living that would really help us all. Looking out for each other, offering help, accepting help, putting people and our compassion for them first.

During my battle with MS, I learned how our brain, our own neural pathways, take this same adaptive approach. I explain to people who ask me questions about my MS that the central nervous system is your body’s electricity. When the synapses between nerves don’t work, it’s like a faulty cell phone or computer charger; you can’t really trust him.

In our body, when nerves cannot share information from your brain, the message may be confused or completely missed. A phrase I’ve heard often from MS warriors I’ve befriended cleverly reverses this dynamic: “MS kills connections, connections kill MS.”

We have to find new ways when the normal ways don’t work anymore

When we call in from work or ask for more help at home, it can be hard to adjust. Often the only way is to pass. I am ONLY able to handle all of this because of the extremely strong support network I have, thanks to my husband, my parents, my family, my friends and my colleagues who meet me where I am and offer the accommodations that I need and deserve.

The best solutions are hybrid and multi-pronged, just like how we deal with many health-related issues. We have all learned this up close, painfully, due to the past two years we have lived through the global pandemic. We’re talking about hybrid schedules in the USA TODAY newsroom, to include people who just can’t return to our offices yet. My medical team offers several treatment options for my own complete wellness: regiments of medicine, plus talk therapy, eating well, and moving my body.

Prioritizing mental health is essential, and I am grateful that Gannett, USA TODAY parent company, has an employee resource group for that. Find out if yours has one at this link here and consider signing up.

We don’t have the luxury of going through life without risk. Lean on your employees, because they need you as much as you need them. Like many people in general, I turn to the art and work of musicians, comedians, actors, and film and television producers to find words that help me feel stronger.

I felt transfixed watching David Byrne’s “American Utopia” while working on this story. In the first song of his Broadway show (currently airing on HBO), he holds up a brain model as he sings the line below. These words seemed to have been made for me in my particular situation with MS.

“Now it looks like a bad connection. No more information now. Running through your neurons, like a whisper in the dark. Look up to the one who loves you. It’s safe where you are.

I’m getting my next infusion of meds in about two weeks, and I’ll probably be back to typing, scribbling in notebooks, doing all the things I normally do. Thanks to people who care (including people who share and read this story), I can manage and adapt. It’s safe where I am.

This is America is a weekly take on current events from a rotating panel of USA TODAY Network reporters with diverse backgrounds and points of view. If you see this newsletter online or if someone forwarded it to you, you can sign up here. If you have any comments for us, we would love for you to post them here.

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