By Lindsey Holcomb, as told to Rachel Reiff Ellis
Both my daughters were still in diapers when I was diagnosed with multiple sclerosis (MS) in 2017. My diagnosis arc was long. Looking back, I had symptoms as long ago as high school that I now recognize as MS.
But in my mid-30s, my symptoms started to feel urgent. When I read bedtime stories with my girls – one of my favorite times of the day as a working mom – I wasn't processing the words correctly. I'm well read and well spoken, but I couldn’t get things to come out of my mouth correctly, which concerned me.
That was what initiated the MRI that gave me my MS diagnosis.
Overwhelmed With Information
I was actually happy to get my diagnosis because I finally had definitive answers to something that’d been a frustrating mystery for a long time. But alongside that relief came feelings of being overwhelmed. Well-meaning friends and family sent me books on MS. But instead of being helpful, their kind acts had the opposite effect.
I had two little ones in sleep training at the time. There was no way I was going to get through a 4-inch book on neurology. Plus, advice about overhauling your diet and reducing your stress to help reduce your symptoms felt out of reach for me as a working mom of two small children.
My first attempt to process what was going on in a healthy way was joining online MS support groups. I attended local groups as well. While I think they’re a great resource for some people, they weren't for me. In fact, some of the people there had more aggressive forms of MS than I did, which at the time felt frightening.
I wasn’t meeting people like me – still raising kids and working. No one I knew in my other circles had MS, however. I didn't feel I had a community.
So, I turned to one of my personal tools for processing emotions: making art.
Turning Anxiety Into Art
Growing up, I was always encouraged to create. I didn't go to school for art, but it's something I fall back on to relax on weekends or evenings. One night, after putting my kids to bed (for probably the fourth time), I was sitting with one of my MRI images, feeling all the feelings about it.
The first time I saw images of my brain, they were terrifying. I’m squeamish when it comes to what’s going on inside my body. Seeing your brain with these bright white spots that are plaques is scary because, next to the heart, that’s one place you don’t want to see things that don’t belong.
So I grabbed some materials in my art pile and made my own interpretation of that image. I used red, black, and gold. I made an evening of it. It felt like a diary entry. It helped. There were no expectations, no constraints, just exploration.
I posted it on my Instagram page, just for friends and family, and soon it was shared by the National MS Society. People resonated with the image. Suddenly I was seeing comments roll in about how the image was comforting and took away some fear.
I realized: These are my people. This is who I'd like to hang out with and talk about MS with a different, less clinical perspective. We can process through the lens of art.
The Colors of MS
I started to reach out to a few people in the comments on that post, asking if they’d be open to letting me paint their MRIs. This was the beginning of my #ColorsofMS project. To this day, I’m shocked and thankful that people are willing – and excited – to trust me with their personal medical information and allow me to transform it into art.
It's a personal process when I work with someone. About 2 out of 5 of them choose to publicly share their story alongside their portrait, which I completely respect. Not everyone is there. It takes a considerable amount of energy to sit down and summarize your MS story into a few paragraphs.
There are themes I hear repeated often as I get to know people through these projects. A lot of it comes down to putting down boundaries that protect your energy and giving yourself an extreme amount of grace. That’s easier said than done, but it’s therapeutic to say out loud.
Giving yourself grace is going to look different for everyone. But what it boils down to is learning how to say no, leaning into what brings you joy, and opting out of the “grind” that’s often celebrated in the workplace.
It’s a standard I continue to hold myself to. I anticipate taking fewer commissions in the coming year because I’ve let this work crowd out some of my own rest and processing. So I want to give myself that grace, too.
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Photo Credit: iStock/Getty Images
SOURCE:
Lindsey Holcomb, living with MS since 2017.
