A few weeks ago, I woke up to find that my left arm, hand, and leg were not working as they normally do. It hasn’t let up. The left side of my body has a feeling that I would describe as static, a fuzzy noise even. It’s not just a strange feeling though; my limbs are significantly weaker.
When I’m able-bodied, as I typically am most of the time, my fingers fly across a keyboard. I pick up my 20-month-old toddler and rest him on my left hip. I’m a lefty, and I love putting my thoughts down on paper. Right now, I can’t do any of those things, at least not without paying a painful price later.
I’m Shannon Rae Green, an audio editor and producer for USA TODAY, and I have multiple sclerosis (MS). Welcome to this week’s This Is America, where we’re taking a look at my experience as a member of the disability community on Multiple Sclerosis Awareness Week.
But first: race and justice news we’re reading this week
MS rears its ugly head
I was diagnosed with relapsing/remitting MS in late 2016. I immediately got on medicine and started seeing a neurologist, and that’s worked well for me. MS presents differently in every single person who manages it. For me, relapsing/remitting MS means I can lose certain abilities, experience certain symptoms but then, like magic and with good treatment, I’m back to feeling the way I felt before.
When a relapse happens, it’s always unexpected. After I dust myself off from the blow of a new reality, I adapt. My right arm and right hip hold the heavy things (like that sweet kid of mine).
Currently, I’m avoiding handwriting and typing, so I use dictation on my phone and laptop instead. I try hard not to tempt myself to fall into my typical way of doing things because it causes me pain. Plus, I can get exhausted too soon if I don’t do things in a different way. My husband, son and co-workers need me to be present, and I want to be present for them right back!
This is what it’s like when your nervous system can’t do its job. I feel out of whack and extra exhausted since I’m not as strong as I usually am. The doctors call that fatigue, which is known as a classic and treacherous symptom of MS. I respond by working around it. I’m testing new muscles, and new neural pathways even, so that 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 body.” Many of us have experiences with temporary disability. The U.S. Centers for Disease Control and Prevention posits that one in four people in America are disabled.
Over a number of years, I have slowly realized that I’m a member of the disability community. With even further reflection, I’ve found that I’m proud of it. I cannot type as I normally do, at least right now, but I’ve figured out how to write so that I can share this message with many people. That’s a gift.
I’ve had the pleasure to learn from others who are disabled or who live with a chronic health condition. Here are my favorite lessons and tips from these people:
They aim to focus on what they can do or how to adapt to get around what they can’t do.
They let themselves feel their real feelings (the frustration, for example) and lean on others in their community to process these emotions.
They have embraced asking for help. Both from a medical team (physical and mental support), but also from their significant others, from people they date, from close friends, family and co-workers, too.
These are all manners of living that would really help us all. Checking in on each other, offering assistance, accepting help, putting people and our compassion for them first.
In the course of my fight against MS, I’ve learned how our brain, our own neural pathways, take that same adaptive approach. I explain to people who ask me about my MS, that the central nervous system is the electricity in your body. When synapses between nerves aren’t working, it’s just like a faulty cellphone or computer charger; you can’t really trust it.
In our bodies, when nerves cannot share information from your brain, the message can get muddled or missed altogether. An expression I’ve heard many times from the MS warriors I’ve befriended turns this dynamic on its head cleverly: “MS kills connections, connections kill MS.”
We need to find new pathways when the normal ones aren’t working any longer
When we call out from work, or ask for more help at home, it can be hard to adapt. Often, the only way is through. I’m ONLY able to manage all of this because of the wildly strong support network I have, thanks to my husband, my parents, my family, friends and co-workers who meet me where I am, and offer the accommodations I need and deserve.
The best solutions are hybrid and multi-pronged – just like how we handle a lot of health-related issues. We’ve all learned this up close, painfully so, due to the last two years we’ve lived in the global pandemic. We’re talking about hybrid schedules in USA TODAY’s newsroom, to be inclusive of people who simply cannot yet return to our offices. My medical team suggests several treatment options for my own comprehensive wellness: medicine regimens, plus talk therapy, eating well and moving my body.
Prioritizing mental health is essential, and I’m grateful that Gannett, USA TODAY’s parent company, has an employee resource group for that. Find out if yours has one at this link here and consider joining.
We don’t get the luxury of going through life risk-free. Lean on your people because they need you as much as you need them. I, like many folks in general, turn to art and the work of musicians, thespians, actors, and film/TV producers to find words that help me to feel stronger.
I felt transfixed watching David Byrne’s “American Utopia” while I was working on this story. In the first song of his Broadway show (currently streaming on HBO), he holds up a model of a brain as he sings the line below. These words felt like they were made for me in my particular situation with MS.
“Now it feels like a bad connection. No more information now. As it passes through your neurons, like a whisper in the dark. Raise your eyes to one who loves you. It is safe right where you are.”
I get my next infusion of medicine in about two weeks, and I’ll likely get back to typing, scribbling in notebooks, doing all the things I normally do. Thanks to the people who care (including people sharing and reading this story), I can manage and adapt. It is safe right where I am.
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This article originally appeared on USA TODAY: Disability community has saved me as I fight multiple sclerosis