My MS Story, by Lindsey Holcomb
My Multiple Sclerosis Story
By Lindsey Holcomb
I was 16 when I would joke with friends that my superpower was the ability to fall over when standing perfectly still.
I was 20 when I noticed that my right leg would choose to give out on me at random, or my hands would involuntarily shake after symphony rehearsal.
I was 30 when fatigue was becoming the deciding factor to call-in late to work, to cancel plans with friends, and to even affect my marriage.
I wasn’t diagnosed with multiple sclerosis until I was 36.
By this time, I had heard every diagnosis under the sun. It was more often than not attributed to my depression, my anxiety, or my hormones. “Take this blood test, take this supplement, check back in six months” was the norm at my doctor appointments. The year I was diagnosed saw three trips to the ER with dizziness, fainting, and numb limbs. At one point, a nurse who was trying to be helpful, mentioned to me that maybe I should bring my husband with me to appointments. Doctors would take my complaints more seriously she said.
When I finally was diagnosed, I honestly felt relief because I had started feeling like maybe I was crazy. It has been just over a year since my diagnosis, and it has been a year of learning. I am so much more attuned to my body, and give myself a lot more grace.
In 2017, I started painting in earnest. For me, it was time at the end of the day to relax and be creative. I treated it like meditation, and it was a welcome space just for me after caring for my small kids during the day. I didn’t worry about whether I was “good” or had proper technique, whatever came out just came out. Later that year I dedicated my first show to my daughters, and printed out (in large-scale) a letter to them. In the letter I acknowledged that I was sick, that I struggled with my wellness (both physical and mental), but that I wanted them to know that I was also vibrant and daring. And that they could be too.
In this spirit, after my multiple sclerosis diagnosis, I chose to paint my MRI in a moment of grief. It was one of my quiet moments where I was frustrated over my lack of energy, my lack of patience because I was feeling
like I was losing control to an illness I still had so much more to learn about. This painting became such a powerful moment in my diagnosis journey for me, because unlike my MRI, the lesions were not the only thing that I could see. I could see my energy, my anger, my determination, my acceptance of what was my beautiful mess.
When my painting was shared by the National Multiple Sclerosis Society this past January, I was floored by the response. I used to feel a bit sheepish when people asked me what the painting was. “My brain…” I’d reply quietly. But after the response from the multiple sclerosis community, my response has been to smile and boldly state “It’s MY BRAIN!” The healing for me continues daily, as I walk others through the same process of translating their diagnostic MRI into art. No matter how early or late my project has come into my participant’s journey with MS, seeing them exclaim “LOOK at this – it is my brain!” makes me cry happy tears every time.
I chose to create my project #colorsofms so that I could help as many people as possible flip the script on how they viewed their MS. It is a process that humbles me daily. It’s not uncommon to hear from someone that they’ve never had the nerve to look at their MRI, or that they have no idea how to access their MRI images – I’ve been there myself. Even requesting your own MRI imagery is a strong healing step, because really, it is yours! It is you!
My project goals are simple. I want to paint 365 MRI’s and share 365 stories of those living with multiple sclerosis. Every painting and every story is different, which I think is so impactful for others to see. I dream of compiling the stories and art into a colorful and bright book. I want to display all 365 images in health facilities where they can be seen by as many people as possible. I’d love it to be the first thing somebody saw when they are newly diagnosed so that they know that multiple sclerosis is not an ending, it is not a sentence, and it is not black and white in any way, shape or form.
Never in a million years would I have thought that my passion is (simply put) to paint brains. But I have never felt more energetic, more connected, and more dedicated to anything – and without my multiple sclerosis diagnosis, I wouldn’t have discovered this about myself. I don’t know what the future holds, but I will say that because of my MS I will be healthier. I will put what energy I have into people and projects that feed my energy, not sap it. My daughters will see that I take risks, try new things, and though sometimes I literally fall over – I can laugh it off and try again. So really, maybe falling over while standing perfectly still IS a superpower, because it has given me a fresh perspective on how I choose to live my life.
Follow Lindsey on Instagram and visit her website here!
Written by
Lindsey Holcomb
Edited by
Garrett Owen
Lindsey, I love your story. You couldn’t have made it any more clear. I just love your brain painting too. You are inspiring. Thank you.