Colors of Multiple Sclerosis with Artist Lindsey Holcomb

Episode Transcript

Dr. Correa:
Saludos and hello. I'm Daniel Correa.

Dr. Nath:
And I'm Audrey Nath.

Dr. Correa:
We're two neurologists and fellow brain geeks hosting the Brain & Life Podcast. This show, the Brain and Life Magazine and website are all brought to you by the American Academy of Neurology.

Dr. Nath:
We're so glad you're joining us. Daniel, today I got to sit down with a fantastic woman, who has multiple sclerosis and is also an artist, and has managed to bring the two together with these really whimsical paintings of people's brains, which I think is amazing because I can't draw to save my life. I don't know if you have an art background, Daniel?

Dr. Correa:
Oh, I loved art. Actually, for a period of time when I was growing up and in high school, I debated whether or not I was going to go to art school instead of go to liberal arts. It's an amazing idea. We spend our time looking at MRIs as neurologists. It would be fun to actually, instead, try to recreate that or even just draw on one.

Dr. Nath:
And that's exactly how she looked at it, I think. She says, like many other patients, she was a bit scared at first of looking at her MRI, which, to us neurologists is interesting because we look all day at people's MRIs, right? But from her perspective, it was kind of scary, and so drawing it and adding her creativity to it helped her feel more comfortable to look at her scans. And since then, she has helped people from all over the world with taking their MRI scans and drawing, and adding some whimsy and creativity, and helping other people take ownership of their healthcare.

Dr. Correa:
I really appreciate that idea of just the empowerment of owning your MRI, owning your things and getting out to apply your own creative experience and energy to that, and how that might impact or help someone manage with their condition.

Dr. Nath:
Today, we are speaking with someone who has a very, very unique way of looking at the brain. Lindsey Holcomb is an artist who also has the autoimmune neurological condition, multiple sclerosis, or MS. She has been inspired by images of her own brain to create absolutely stunning artwork.

Dr. Nath:
Lindsey is the founder of the Colors of MS project, where she takes actual MRI scans of actual people with MS and creates artwork. Not only that, but she connects with people with neurological diseases all around the world and helps share their stories, and we at Brain & Life are all about that. So I've managed to catch Lindsey in-between her painting sessions. Welcome to the Brain & Life Podcast.

Lindsey Holcomb:
Thank you so much for having me. I'm so excited to speak with you today.

Dr. Nath:
I'd like to start with, what was it about your MRI scan that inspired you with this idea?

Lindsey Holcomb:
When I first saw the image, it was very frightening. If I'm being perfectly honest, as a patient who had never had a brain scan before of any kind, it was... I remember my neurologist showing it to me and it just being... I laughed because that's my default discomfort mode.

Dr. Nath:
Relatable.

Lindsey Holcomb:
Yes, it makes it very hard in medical appointments when I'm like, "Oh, I'm fine. I'm fine."

Dr. Nath:
Oh, gosh. You're not the only one.

Lindsey Holcomb:
Yes, thankfully my neurologist now knows like, "Oh, oh, I feel like you have a question that you just haven't percolated yet.

Dr. Nath:
Yeah.

Lindsey Holcomb:
So I had seen it, and when you see these little lesions, almost like bright lights in your brain scan, it was frightening. It didn't feel personal. I suddenly... The way I personally reacted to it is I felt like, "Okay..." I immediately started the research, and I felt like a statistic, and I felt like... You try to do all the logical reasoning in your brain. Like, "Why is this now? Why me?" Everyone goes through that. And I had this image, it was sitting in my virtual chart, and I had looked through a few of them because anyone that goes through these MRI processes knows that you're spoiled for choice for how many-

Dr. Nath:
Oh, boy. Yes.

Lindsey Holcomb:
... images come out of sessions. And it was really a moment of grief that I took the image, and I wanted to change it into something that felt like me, that felt vibrant, that still had color to it, that meant things to me. Obviously, I am not a neurologist, so when they start doing all the contrast and things like that, I don't know what it means unless it's explained to me.

Dr. Nath:
That's OK. You know what it looks like. That's cool.

Lindsey Holcomb:
I know, I know. My Asian studies degree does not help me with that, but I can tell you... And the session, I would equate it to almost writing a journal entry or a diary entry. It was a personal moment. It was a personal expression through art, just kind of getting my feelings out on the page. And when I was left with this image, this alternate image, that if you walked in and saw it on a wall, you wouldn't say, "That's a brain," or "Ooh, tell me the whole story behind it." It would stop you in your tracks and make you consider. And for myself, it was very therapeutic. And when it was shared, and later we can talk about it becoming the project, that was very unexpected to me, but it also helped me see that others may want that experience.

Dr. Nath:
So basically, because you're an artist and painting is therapeutic for you, this was a stressful situation in your life, and you painted because that's what you do.

Lindsey Holcomb:
Yeah, absolutely. Yeah. Yeah. I was a young mother at the time. My girls were about three and four, and so I think a lot of parents can relate to... You finally get out of that bedtime fog, you've done the gauntlet of your nine to five. You've done dinner, you've done the bedtime routine. Those are the ages where it's like Whack-A-Mole. They're popping out every 10 seconds.

Dr. Nath:
Yep. That's my kids. Yep.

Lindsey Holcomb:
And there's finally calm. Yes.

Dr. Nath:
Yep.

Lindsey Holcomb:
It was that 9 p.m. calm where you're tired, but you still want to do something because you want to be a person. That's really what that session was.

Dr. Nath:
There's a long history of medical illustration. We're going back to Leonardo da Vinci and Michelangelo and Frank Netter, who drew these very realistic drawings of neuroanatomy. And so your artwork takes that concept, a medical illustration, and brings it somewhere else entirely, bringing in whimsy and color and even other imagery entirely that's inspired by the anatomy. I'm curious, did you go back and study any of the work as the original anatomists while doing this? Or do you try to stay focused on your vision?

Lindsey Holcomb:
I have looked at it on occasion, I think when I was first trying to flesh out how I wanted to do this for other people. Realistically... Once it became a project, I should say, I wanted to think, I'm like, "Am I considering every way of how I would like to do this? Do I want to be a little bit more literal?" But I do, like you mentioned, stay away from that because it will influence how I see it in the studio. And so it really has, even though it's evolved over time, it has stayed. I've stayed in my own little corner with that.

Dr. Nath:
I would love to see what those guys would say about your work.

Lindsey Holcomb:
Oh, gosh. Well, I'm tickled.

Dr. Nath:
Like, "Ah, how might someone interpret this later?" Because in the beginning, without photographs, they're just trying to put what's there. Now we have the freedom to do something different, so I think it's just a really neat evolution of medical illustration.

Lindsey Holcomb:
Oh, thank you.

Dr. Nath:
I would like to ask you about some of your experiences dealing with the neurological condition. Reading a little bit, it looks like, unfortunately, you dealt with a lot of really frustrating experiences of being misdiagnosed, of having your symptoms being brushed off or blown off, First off, I'm so sorry about that. And second, what would you tell our listeners about advocating for your own care?

Lindsey Holcomb:
Yeah. Oh, the things I could tell myself in my twenties, I tell you.

Dr. Nath:
Go for it.

Lindsey Holcomb:
When I look back at it with what I know and understand about MS, and I want others to understand, I am very young into my fifth year of this diagnosis so I still consider myself on a large learning curve. I'm still really learning how to manage my own symptoms and what works for my own body. However, now that I've learned a little bit more and have connected with others that live with MS, I really do think that I saw a first symptom somewhere about when I was in high school, and I attributed it to being a very unathletic person. I am the kid that stands there and gets hit in the head with the ball because I'm not paying attention. I just, not a bone in my body is athletically inclined.

Dr. Nath:
You were an artist.

Lindsey Holcomb:
Yeah. We had always joked about that... Or rather, I... self-effacing humor, I suppose, but my reverse superpower is that I could fall over while standing perfectly still. And I remember that happening at my locker, just being like, "Woo!" Losing balance. And from there on out, I would say, my symptoms felt so varied to me. I've always had muscle weakness on my left side. My left leg gives me a heck of a time, sometimes. Cog fog has always been a challenge, cognitive fog. Optic neuritis now, which came into play later.

Lindsey Holcomb:
But my symptoms jumped all over the place and it was hard for me, and I can empathize to a degree with my medical team at the time because there are so many moving targets that I don't know how differently things would've gone if I had known to be a better advocate that I am now. I call my twenties... It was stress soup. You're in college, you're learning to be an adult. You're in your first job. I lived in another country for a while. I taught in Japan for a while. I had a lot of-

Dr. Nath:
Oh, really?

Lindsey Holcomb:
... stress situations that I felt like my environment was constantly changing, and I was constantly trying to adapt to the needs of wherever I was in. And so I was never quite sure, "Well, is it cognitive fog or am I not doing a good job of remembering when to eat? Am I rested? Am I..." All these different things that, as a young adult, I could have done better with. And because of that, I had any number of, "Well, it could be this." "Let's check back in six months," was probably a tattoo I should have gotten. "Let's just revisit this." Like, "Let me know if it's still bothering you."

Dr. Nath:
Oh, sigh. And so time passed, and passed and passed.

Lindsey Holcomb:
It passed and passed and passed.

Dr. Nath:
Oh, gosh.

Lindsey Holcomb:
Where I really started to push for answers was when I became a mother, and I had noticed one day, and maybe this is because our bodies are quieter at night and the hubbub of the day is falling away a little bit. And I was reading a story to both of my girls at night. And I pride myself on being articulate. I pride myself on being a reader. It's always been important with the girls, read to them since they were in my belly. But I'm sitting there reading this children's story I've read a million times, and I got the word in my head, and it's just coming out as weirdness out of my mouth.

Dr. Nath:
Oh, boy.

Lindsey Holcomb:
And I just kept getting a misfire while I was reading.

Dr. Nath:
Yep.

Lindsey Holcomb:
And I was noticing that, more and more, that I'd be pronouncing words oddly, or things were coming out strangely. And I was attributing it to high stress at the time, but it really had me knocking on my care team's door again, to say, "Can we push for any... I've done A, B, C, D and E this year. Are there other things we can do?" After that, it actually went pretty quickly because I had not only the MRI, but then we had a spinal tap to confirm what was happening.

Dr. Nath:
You mentioned optic neuritis. Have you lost vision?

Lindsey Holcomb:
I have. Yep. And it-

Dr. Nath:
In which eye?

Lindsey Holcomb:
... continues to be a challenge. In my left eye. In my left eye, and it just continues. It's a challenge, but I'd say that's probably my largest hurdle with managing my symptoms.

Dr. Nath:
As an artist, how do you compensate for that?

Lindsey Holcomb:
It's like another grief cycle all over again.

Dr. Nath:
I bet.

Lindsey Holcomb:
It is because the way I do the artwork so far in the Colors of MS, and in a lot of my own personal work, I've come to understand is really, it's not going to be forever, which is both exciting and a little depressing. I do a lot of detail. I do hand embroidery. I do hand dotting. That's very, very meticulous. And a lot of that is because I'm stubborn. I'm deeply stubborn, and it's my kind of, "Take this, MS. I can still do dots. It may take me a week but I'm going to do it."

Lindsey Holcomb:
But the way I've been really tackling that question in my studio this last season, really, was painting with my eyes shut.

Dr. Nath:
Oh, wow.

Lindsey Holcomb:
And trying different mediums and things like that, where I need to find another technique or way or a medium that still brings joy that I'm not fighting against my body.

Dr. Nath:
That's a fascinating adaptation, though. I don't think I've heard of anyone doing that. That's interesting. Then you could focus on texture, I suppose, with your eyes closed and spatial relationships, I suppose.

Lindsey Holcomb:
Yeah.

Dr. Nath:
For our listeners, optic neuritis is a condition in which the body attacks the optic nerve, and that's the nerve that connects your eyeball to your brain to be able to see. And so in some patients with MS, there can be visual loss, and sometimes it can start with a very subtle color change from that eye. You've mentioned coming up with multimedia or potentially exploring different avenues to stay creative no matter what, which is definitely the mantra of an artist, "I will find a way." It makes me think that... There is a singer. She's French. Charlotte Gainsbourg. She's the daughter of Serge Gainsbourg, who's a famous French singer. She herself had some sort of neurological condition and went through an MRI, and she ended up writing an album using the MRI sounds, that's interweaved in the songs.

Lindsey Holcomb:
I love hearing what people come up with, and it gives me a lot of hope. It gives me a lot of hope as a creative and as somebody managing this illness on a day to day.

Dr. Nath:
How have you been reaching out to other people with MS and other conditions? Have they been reaching out to you through your Instagram and the Colors of MS project?

Lindsey Holcomb:
Yes, initially it was me reaching out to people, and it was terribly awkward. My initial painting was shared by the MS Society, which was a surprise to me. That was wonderful. I suddenly started reading these comments going, "Whoa, whoa, whoa, wait. These might be my people." Because people are saying, "I like looking at this," or something else. Or, "It's nice talking about it through art or a different medium that's not... that doesn't..." It kind of does something for our anxiety. It tends to open people up a little bit. So yes, I was doing the initial reach-out of, "Can I paint your brain?" But then, thankfully, as we got rolling a little bit, people started reaching out. And so I've made connections through the people I've worked with, the people that have just been along with me for this ride. And so, thankfully, it's word of mouth by now, but it's just such a-

Dr. Nath:
It's US and abroad too, right?

Lindsey Holcomb:
And abroad, yeah. Yeah. I believe I'm at... I think the count is now 33 US states and 13 countries, aside from the US, that have people that I've worked with. I'd say probably about half of those people have chosen to share their story through the project. And what that means, what the project really is, is choosing to publicly share your story through my social media page, which is not going to be where everybody's at when they want this special piece of art, and I honor that. It's really touching that, a lot of times, when I first work with someone, it's the first time they've elected to look at their MRI head on.

Dr. Nath:
Oh, whoa.

Lindsey Holcomb:
And they've said, "Yeah, I've seen it discussed in my appointments, of course, but I've never sought it out. It's not something I've ever wanted to look at. It felt frightening. It felt..." Probably all those feelings that I had in the beginning, too, and I understand. And so that means the world to me that they would want to do that.

Lindsey Holcomb:
And then the second half of that, really, bravery is sharing your story. Putting it down onto paper is a lot for people that have been through a long diagnosis arc, like many have. Some have not. I've heard it mentioned before on this podcast that MS affects every person differently, and the same would go for how they arrived at their diagnosis and how they're moving forward to manage their particular MS. And that's what I love about the project the most, is that people get to see how varied that is. People get to see that people are still doing all different kinds of careers or they're achieving their goals. There's people running marathons. There's people-

Dr. Nath:
Fantastic.

Lindsey Holcomb:
Writing books, doing anything you could think of. And I wish I had seen that in the beginning.

Dr. Nath:
Well, that's awesome that you're doing this for other people, because someone listening right now or someone on your Instagram page is in that stage of life where you were in your teens and early twenties, and you can give back in that way. Where can our listeners find you?

Lindsey Holcomb:
Yes. I am most active on Instagram, and I can be found at Lindseyjoyholcomb on Instagram. And I also have a website by the same name, Lindseyjoyholcomb.com.

Dr. Nath:
People with neurological diseases can reach out to you with MS and other conditions?

Lindsey Holcomb:
Absolutely. Yes, yes. I have painted many other conditions that have medical imagery attached to them, so that's always such an honor to work with, as well as just general abstracts as well.

Dr. Nath:
Oh, that's wonderful. I look forward to seeing more on your Instagram page.

Lindsey Holcomb:
Thank you.

Dr. Nath:
Thank you for speaking with us and sharing your artist view of what we, as neurologists, encounter every day and don't think about creatively enough.

Lindsey Holcomb:
It's been my pleasure. I really appreciate the opportunity to connect with you, and thank you for everything you're doing on Brain & Life.

Dr. Nath:
Is this episode leaving you wanting more? Get the latest tips on healthy living and management for more than 250 neurologic conditions by visiting Brainandlife.org, where you can learn about neurology every day, powered by trusted neurologists.

Dr. Nath:
To learn more about multiple sclerosis, the healing power of art and everything in-between, I caught up with Sally Harris, a neurologist and member of the American Academy of Neurology, and accomplished artist in her own right. Welcome to the podcast, Sally Harris.

Dr. Harris:
Thank you, Audrey.

Dr. Nath:
So I have so many questions for you, and let's start from the beginning, I think, for our listeners. You see patients with all sorts of different disorders, and then you also work on art. And it's interesting because Lindsey Holcomb told us about how she has multiple sclerosis, and she also has her life as an artist, and now they have come together and she paints these beautiful, whimsical paintings of MRIs. Do you find that creativity affects your practice of medicine?

Dr. Harris:
Yes, absolutely, but I really think that my brain does not work like a typical neurologist. For example, when I was in medical school, I couldn't remember facts. I could illustrate them in my head, so I would do cartoons of things like microbiology and paraneoplastic syndrome so I could imagine them as cartoon figures with scenes and all the pieces to the scenes. And that was how I remembered a lot of the tough stuff that didn't really... it had to be memorized more than anything else. But I think that art has made me a more creative thinker about my patients. And I hear that from my patients all the time, that I've come up with ideas that their other six neurologists never thought of because I don't stay in the box, I think.

Dr. Nath:
Yeah, I could see that. Especially within neurology, we're not following flow charts, necessarily. We do need to think broadly sometimes, especially when diagnoses are not obvious at all. Have you found, in addition to affecting your work, that art can be meditative or help you even with pain in your own life?

Dr. Harris:
Yeah, I've found that art is really useful for me when I'm stressed. Creating things, of course, helps me express things that I can't really express in words. Appreciating other people's art... And I have to say, I really liked Lindsey's art when I looked it up. I really appreciate her concepts and what she's done with that. Very interesting and very creative.

Dr. Nath:
She was telling me that art helped her specifically with how unpredictable her disease is. With multiple sclerosis, attacks or flares can happen in a way that at a time you may never know when the next one will happen. And that doing the paintings helps center her in the moment. I'm curious. What do you tell your patients that are dealing with a chronic, painful condition? Do you ever recommend that they try art or something similar?

Dr. Harris:
Yeah, for a lot of them, they can use out-of-the-box treatments. For example, I've referred a lot of them to the Animal Humane to get an animal.

Dr. Nath:
Oh, cool.

Dr. Harris:
I've sent them to art classes. I've sent them to physical therapy, to Tai Chi, to download YouTube videos for stuff.

Dr. Nath:
Nice.

Dr. Harris:
I try to deal with lifestyle as much as I can, so when people tell me that they're stressed about something I try to find ways that they can deal with that. I think we all probably do this, but there are a lot of things in art that could be very helpful.

Dr. Nath:
And I think that applies to so many conditions. For example, I think a lot of neurologists themselves have migraines. I do. And I can-

Dr. Harris:
That's true.

Dr. Nath:
... definitely tell when stress can trigger physical pain, and it's real. We're not just saying that. We notice it amongst ourselves as neurologists, and so lowering some of that stress can make a big difference. I was thinking about something that Lindsey was telling me, is that by using art and painting MRIs for patients, that there were patients that then became connected and finally felt okay with looking at their MRIs. And it's just something interesting to me. As a neurologist, I forget this. I spend my days looking at imaging, but that there are patients who are intimidated or even scared of looking at that image. Do you-

Dr. Harris:
I see that.

Dr. Nath:
... go through images with your patients and do you see that as well?

Dr. Harris:
Some of them are afraid of it, and think about cancer patients also. They're afraid to see them. They don't want to see what's on that scan. They'd just as soon not know. Another thing I loved about Lindsey's work is that she said she was using kintsugi, the Japanese art of repairing broken pots. I had to look it up because I didn't know what that was, but I love that concept and I've seen it before. I just didn't know what it was called. But I'm thinking that too, that we all, people are broken, especially if you think you have MS and the MS symptoms. And putting it all back together with that gold glue, or whatever they use to seal it back together. So what they did with the Japanese... There's a Japanese art form of this because I've seen it before. I just didn't know what it was.

Dr. Nath:
It's beautiful.

Dr. Harris:
They break a pot, and then they take the pieces together and they put them back together with a gold seal. And the pieces, it can be absolutely beautiful. And I'm seeing that a lot of what she does with the MRIs follows that exactly, just like she said, that she takes the MRIs and makes them really, really amazingly creative and beautiful. She did a really, really nice job. Very, very creative way to express that.

Dr. Nath:
That's such a neat concept and art that is so relevant to us, which is the idea that instead of trying to hide a scar or hide something that's abnormal, to use that word, instead to take it for what it is. That, yes, there was a break in this pottery, and we can celebrate the path that this object has been on, or this brain has been on, and celebrate the person with scars and all. I think that's beautiful.

Dr. Harris:
And so there was another theory in that, that you don't really realize what your full potential is unless you go through hard things, unless you break, unless you're the pot that broke into pieces. And then you make a beautiful thing at the end. It isn't what it used to look like. We're not what we used to be either. Patients develop things and they go on with whatever their deficit is or disability is. A lot of times, they don't show anything but they still feel it, and they feel like the broken pots that are put back together. And I see that in my patients too.

Dr. Nath:
Absolutely. I would like to know, before we close out, for people who are interested in hearing from you and what you think about things with all of your different lives, how can people find you online?

Dr. Harris:
I have my regular website, which is Sandianeurology.com. You can always contact me that way.

Dr. Nath:
Wonderful. Thank you so much for joining us, Dr. Harris.

Dr. Harris:
Sure, thank you for having me.

Dr. Correa:
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Dr. Nath:
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Colors of Multiple Sclerosis with Artist Lindsey Holcomb

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