Making Space for Creativity: A Conversation With Artist Priya Rama

Nora McInerny:

Life sometimes has a way of blindsiding you with a feeling of being overwhelmed at the worst possible time. It could come while you're out with friends, running an important meeting or just with your family at home. A spiraling thought that leaves you feeling helpless. That's why you have your self-care, your migraine-coping strategies, that's why you have us.

I'm Nora McInerny and this is The Head Start: Embracing the Journey. A podcast where we'll be taking all those things you usually save for your friend group out into the open, so we can all find a bit of optimism.

I'll definitely be sharing my experiences and vulnerabilities and trying to pick up some things along the way to work into my own routine, but this show isn't about me. It's about life and wow, that just made it sound very deep. And I guess it will be deep, but it won't be heavy. For those battling chronic migraine, these conversations are going to be even more helpful and relatable, so definitely stick around.

This show is brought to you in partnership with AbbVie. So first, let's hear some important safety information and stay tuned to the end of the podcast for more.

Speaker 1:

Indication:  BOTOX^® (onabotulinumtoxinA) is a prescription medicine that is injected into muscles and used to prevent headaches in adults with Chronic Migraine who have 15 or more days each month with headache lasting 4 or more hours each day in people 18 years and older.

It is not known whether BOTOX is safe and effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine).

Important Safety Information: BOTOX may cause serious side effects that can be life threatening. Get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX:

• Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are preexisting before injection. Swallowing problems may last for several months.
• Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms, including loss of strength and all-over muscle weakness; double vision; blurred vision; drooping eyelids; hoarseness or change or loss of voice; trouble saying words clearly; loss of bladder control; trouble breathing; and trouble swallowing.

Please see Important Safety Information, including Boxed Warning, within this podcast or on the website below.

Nora McInerny:

Hi guys, welcome back. In today's episode, we are going to be talking about how creative outlets can help with expressing our struggles, but maybe not in the way that you would expect. I have written books and podcasts about my experiences with grief and loss. I have filled countless journals and blogs with my thoughts, feelings, and memories. Joan Didion wrote, "I don't know what I think until I write it down." That's how I am too. It was always easier for me to write my feelings than to express them out loud.

Not everyone wants to write it all down, not everyone wants to share it widely and you don't have to. Whatever kind of creative outlet you can find and nurture, writing, drawing, painting, crocheting, quilting, building little dioramas, they can all help you communicate what you're feeling and even help you deal with managing it. It's hard to know what is going on in someone else's head unless they tell you. And it can also be hard to tell people what it feels like to be you.

Our guest today, Priya Rama is an artist who uses painting to pull her experiences with migraine attacks out of her own head and onto the canvas. It is mesmerizing artwork and you can feel the drama and emotion in what she experiences as someone who lives with Chronic Migraine. I can't wait to talk with her more about it, but before we do, let's have a chat with my friend Dr. Ryan.

Dr. Ryan, I called you Chris earlier because we have formed a friendship. But I will also respect the fact that you have gone to more school than anyone I know. How are you doing today?

Dr. Ryan:

I'm doing so good. Nora, the dirty secret in medicine is it's mostly about keeping your head down and just continuing to go every day. It's more about the marathon to the end of it because there's just so much to learn that if you do that, if you stick around and you're genuinely interested in it, then you're going to pick something up along the way. And there are a lot of hard stops along the way as far as exams go. But really med school is about sticking it out.

Nora McInerny:

One thing that I've loved about getting to know you is that I have gotten such an education. Can we talk about the importance of early diagnosis when it comes to Chronic Migraine?

Dr. Ryan:

Yeah, it's probably the thing in headache medicine that breaks my heart the most is that folks deal with this for so long. I think there's a lot of factors that play a role in that. I think some of its stigma associated with it. My great mentor in headache medicine said, "You got to name the beast. We have to know what we're dealing with." So getting that diagnosis on the front end is just so critical. This is something that I can make by having a discussion with a patient, communicating with them about what they're experiencing and we can make that diagnosis of Chronic Migraine. So until we do that, we can't pick therapies for them.

Nora McInerny:

So you were talking before about how it might take over five years for patients to seek specialist care for headache or migraine symptoms and receive a diagnosis. Which is astonishing to me. What is, I know you've told me before, the definition of Chronic Migraine?

Dr. Ryan:

It's really straightforward. So 15 headache days per month, so at least half the month that you're dealing with some type of headache associated symptom. Eight of those days have to be migraine, they have to meet the criteria for migraine, which is a headache that lasts for longer than four hours. And then it has to have associated symptoms, some type of light or sound sensitivity, and some associated GI symptoms, maybe some nausea, maybe even some vomiting on those migraineous days. And so if a patient walks in the door and says, "Hey, this is what's going on with me." We're talking about migraine, we're talking about Chronic Migraine when it's happened that frequently.

Nora McInerny:

That's astonishing to me. And I was talking with a friend of mine earlier this week who I did not know this, also has Chronic Migraine. And she was saying that on the days where she cannot do the things that she has to do, she can't work because obviously staring at a computer screen is not helpful, not ideal. She can't show up in the way that she's used to showing up out in the world. She can sit in her house in very, very low light or no light and she can crochet. And she can do this because she's been doing it for years and at this point, it is just mostly muscle memory. And when her migraine attack is over, she has this physical thing, kind of to show for it. A scarf or part of a blanket or some piece of art that represents what she was going through when she made it. And I thought that was so beautiful.

Dr. Ryan:

It's interesting you talk about crocheting. So we have a 45 bed inpatient headache unit here at my clinic in Chicago, and crocheting is like on fire. These guys love it. And it's for exactly that thing because it's tactile, because it's your hands. You're exactly right, you can do it in low light, you can do it in the dark. These people are suffering tremendously to be hospitalized while they're dealing with their migraine attacks. And so that is something that is very popular on the floor.

There's something about making those experiences not feel wasted or lost. And that's something that art really brings to the table, whether it's crocheting, painting a picture, watercolor, pencil drawings, you name it. Even folks who are trained musicians will write pieces without the music, so they're going to physically write it on a bar chart in musical notation. Because that's what they can do or think through the music, even though their ears won't let them tolerate the sound itself.

Nora McInerny:

Oh, that's so beautiful.

Dr. Ryan:

Yeah, yeah, yeah.

Nora McInerny:

That's so beautiful.

Dr. Ryan:

Yeah, we have a gallery at the unit because this stuff matters to them. And they're proud of it and they're doing it at a time where it's super difficult to do anything else. Actually, and I know that our listeners can't see this, the painting that's hanging behind me right now was done by a patient on the floor.

Nora McInerny:

Oh. That's so-

Dr. Ryan:

Yeah, that's true.

Nora McInerny:

Wonderful. I love that.

Dr. Ryan:

Sorry to our awesome listeners, there's a very abstract painting hanging in my office behind me right now while Nora and I talk. And it was beautifully done by this wonderful woman who came and stayed with us and she just didn't have any other way to sort of express what was going on. And so yeah, that is a true story. That's hers.

Nora McInerny:

I love what you said about, it's sort of like a way to have created something, have some sort of physical evidence of where they were, how they were at that moment in time. To me, those things are a reminder that it won't always feel like it feels right now.

Dr. Ryan:

Totally agree. And it carries worth. And I think that that's the thing that a lot of folks who are struggling with Chronic Migraine are that when they're really disabled and they're in the throes of their attack, they don't feel very worthwhile, they don't feel very worthy. And so by producing something, this gives them that sense of worth, and there's a level of joy to that.

Nora McInerny:

What about people whose outlets are physical? How can they live with Chronic Migraine and set, chase or reach those kind of physical goals, too?

Dr. Ryan:

I think that even if you don't have a finished product just yet, I got halfway through my watercolor painting or I am able to do a 5K, I'm at that marathon level. I think that that is very much the human experience for most folks. That progress piece is a sense of pride. And if you're ever in a situation and Chronic Migraine certainly fits squarely in this bucket, where you feel less than some of the time, then this is a place where you can be proud of yourself.

Nora McInerny:

So it sounds like to summarize every smart thing you said, if you have Chronic Migraine, you can pursue those goals, whatever they are.

Dr. Ryan:

I think it's super important that you do, not just permission slip to do it. I would say it would be a mistake not to. I know I get this sort of, the sun will come out tomorrow, kind of vibe. But that's really what it is. And as we have better understanding of the science, that gives us even more opportunity to make the diagnosis, work on getting them better and having them feel better through all sorts of avenues that we've talked about together, and with the guests that we've had on. And to continue to pursue artistic outlets, physical outlets, and live.

Nora McInerny:

Beautiful.

Dr. Ryan:

Yeah.

Nora McInerny:

I will be right back after the break with Priya Rama. So stick around.

Hi Priya. Thank you so much for joining us.

Priya Rama:

Thank you.

Nora McInerny:

It is so good to see you. I noticed there is a lot of color. There's a lot of color in your office and in your space. What's your favorite color?

Priya Rama:

I would say probably like blue, purple, the teals. Not the bright ones, more of a watery kind of color.

Nora McInerny:

You look great in pink.

Priya Rama:

Thank you.

Nora McInerny:

I'm a color lover myself and I have been looking at your artwork and it's so beautiful.

Priya Rama:

Thank you.

Nora McInerny:

We are, of course, here today to talk about a lot of things, but one of those things is Chronic Migraine. Will you tell me a little bit about your journey to diagnosis?

Priya Rama:

I've had what I thought were really bad headaches ever since I remember. And typically what that involved is, I was in bed for a day or two in a dark room throwing up, not eating too much and just wanting to be left alone. And so this kind of continued and what it meant for me is if I got one of those attacks, then it meant that I was just going to be out of action for a day or two. It's in my twenties that I got a proper diagnosis of Chronic Migraine. Because I used to get migraines attacks frequently. After I got the diagnosis is when I began to understand how it was affecting my body, and what it was doing to me, and how I could better learn about it and manage it.

Nora McInerny:

I imagine that Chronic Migraine has really shaped your life.

Priya Rama:

Yes, that's all I've ever known. I don't know a life without Chronic Migraine. I remember feeling so alone because I'm in the room alone, but I can hear conversations in the background and other spaces in the home. People carrying on doing their things like family members having their meals or whatever. And here I am alone in the room, waiting for all this to pass and just sort of willing myself to feel better. But even as I've gone through life, pretty much it has shaped everything I do because I never know when a migraine attack's going to come. So it's a constant system of managing to get some activities done.

Nora McInerny:

How has Chronic Migraine affected your family, as well?

Priya Rama:

I mean with my family, I'm talking about my family before I got married and had my own children. So growing up, I think my mother used to get migraine attacks too. Now I know that. And other family members would have different symptoms, headaches and migraine attacks. And so it was something that was kind of understood in the family that, yes, we suffer, we get these symptoms, you kind of just go through it and deal with it. And I didn't think too much about how it was impacting those family members until I got married and had a family of my own. Because things then became much more personal. Having to deal with a husband and having to deal with children and knowing that I'm not always there for them.

I have missed many important occasions, especially when my kids were younger, when they were in elementary school and middle school, I used to feel a great amount of guilt. Unlike other parents, I wouldn't always sign up to do activities because I never knew when a migraine attack would happen. And so I used to feel a lot of guilt and responsibility if I was not able to do what I'd signed up to do. How do you explain to your little child that you're not signing up and they can see other parents volunteering and signing up for things and I wouldn't.

So I think over the years, me missing pretty much in action from different moments in their lives, the guilt just builds up and builds up and builds up, and that adds to the stress. Because you're trying to be so present and perfect, you want to be part of their memories. And now that my children are grown and I ask them, it didn't even bother them. Now they look back and think, it was not a big deal, we knew you had Chronic Migraine. So we knew that you couldn't always be there. It was me that is putting so much pressure on myself.

Nora McInerny:

I'm so glad you said that and I'm so glad your children said that. I have little kids right now and the guilt is real. Even though you know in your mind that it's useless, it's not helping them, it's not helping you. And yeah, you aren't signing up for being the room mom or helping out at the school fair. But you also didn't sign up to have Chronic Migraine, you didn't sign up to feel this way.

Priya Rama:

Yes. Now I look back and I think, why did I stress myself out? But then I wanted to be the best mom I could be, be there and provide and do all the things I could do. I'm very, very grateful to have a husband who is very supportive. He has never, never complained, not even once. He has never rolled his eyes and walked out of the room or expressed anything with any kind of negativity.

So when we first got married, it took me a year for me to get my Visa to come to the US. So he had come in between for my birthday, which is about four or five months into our marriage to India where I was living. And when I went to pick him up, we had planned this romantic train journey back. And the whole train journey, I had a migraine attack, I was completely out. So here's my brand new husband, we are sort of having a honeymoon and I'm not around. And I was thinking then that okay, he's going to leave, this marriage is doomed because already here we are meeting after four months and I'm already not in action. I'm in bed throwing up.

But then he was so impacted because I'm normally a really happy-go-lucky, optimistic kind of person. And he felt extremely helpless because he didn't know what he could do to make me feel better. And that has kind of carried on through our marriage. So he has no time to put any pressure on me. It's only me as a mother and as a wife, I feel like I'm not there for them.

Nora McInerny:

If you are listening to this and you don't have Chronic Migraine, but someone you love does and you're wondering, how should I behave? Be like Priya's husband. Okay, be like Priya's husband. That is exactly how a partner should be.

I am sorry that happened and you did not get the romantic honeymoon that you wanted. But I am so glad that you have a supportive partner and that you've built this beautiful and supportive family. When you get together to go out to eat or have dinner together, how does Chronic Migraine fit into that family experience?

Priya Rama:

So trying to make a plan for dinner would involve trying to find a place where I could eat something that's not going to trigger a migraine attack. So then we are really not going to pizza places because I cannot have pizza with the yeast and the dough and all the cheeses. I cannot do it, that's a trigger for me. So that then dictates all these choices.

I mean, every now and then, we will go somewhere where something can trigger a migraine attack and then I have to deal with it. But most of the time we're thinking about places where I can eat. And we always are looking at the menus ahead of time to see what choices there are, what options there are. Restaurants have gotten so much better now. There are so many more vegetarian and vegan options now, but the triggers are always in the background.

Nora McInerny:

So I want to talk about your beautiful and very visceral artwork, Priya, you are so talented. When did you start expressing your migraine attacks through art?

Priya Rama:

Painting during my migraine attacks has been more recent about, I would say, eight years ago now. I have always seen imagery, but I think since they've been such a part of me, I had taken them for granted for such a long time. But this particular imagery was really, really colorful. And I don't know why, but that one day I felt really compelled. And I use the word compelled because I had to go grab my supplies and try to paint what I was experiencing. And at that moment, I think I might have painted for two or three hours or so, while the migraine attack was still on. And doing so changed something. Suddenly I became really aware that even though I was experiencing the migraine attack, I was feeling kind of calm and collected and much more relaxed. And suddenly I realized that, okay, this is because I've been painting for the last two or three hours. Painting brought a sense of peace and purpose in a way.

Nora McInerny:

That's so beautiful. How has painting changed your experience with Chronic Migraine?

Priya Rama:

Now, I'd like to say I cannot always do this because quite often it's so debilitating that I'm in bed, but I'm able to recall the imagery at a later time. Painting these images, what it's done for me, it's brought a certain acceptance into my life. So as soon as I can feel the migraine attack, I'm immediately ... I can sense getting angry and irritated. And kind of like woe is me and I'm sort of rolling my eyes saying, "Okay, here we go again. Why now?" It was a constant fight.

Painting then has allowed me to embrace and accept their presence in my life. And that shift in perspective has changed everything. Now I know it comes, I deal with it, it goes. I know that no matter how many migraine attacks I've gotten, and how severe it's been, at some point it has gone. Now, can I predict when it's going to go? No. But I know it goes at some point and then I do feel better at some point. So now I no longer stress about it. And so painting then has changed that for me. I think it's brought so much peace in my life that then I can handle this situation.

Nora McInerny:

You mentioned guilt earlier, which is highly relatable. We are very, very, very hard on ourselves. And you also mentioned anger. And I'm so glad you did because that is one of the harder things for people to admit, harder for them to say out loud. Because that is what people consider an ugly feeling, right? Nobody wants you to be mad, nobody wants you to be upset. But I think any kind of struggle, especially Chronic Migraine, can be isolating. I think feeling angry about it is wildly understandable and relatable and human.

Priya Rama:

I'm so very happy you used the word isolating because that's exactly what it is. Dealing with Chronic Migraine is a very isolating, lonely experience. Even if you have a network of family and friends around you, it's something you have to deal with on your own, individually. And when you're dealing with that migraine attack, you don't necessarily want to talk about how bad it is. It's kind of a dichotomy because you want people around you, but at the same time, you just want to be left alone sometimes.

So painting for me then has given me sort of a strength framework to go through the process. Because before I started painting, I would be in bed and I'm so hyper-focused on what I'm feeling. I'm feeling more and more sorry for myself, more and more hopeless. You're already in a room alone and then you just get lonelier and lonelier. And then when that continues to happen in such a chronic cycle, you don't realize all the ways that you're beginning to isolate yourself. Because you stop doing things because you know, oh, I cannot go and watch the soccer game because I'm going to be out in the sun. So I don't want to risk it. I mean, a migraine attack may happen or may not happen, but you're basing so many decisions on your past experiences. And soon, you're so isolated, you stop doing a lot of things.

So for me, finding this creative outlet ... or I shouldn't even say outlet because it's more than just an outlet for me, it's really part of my being. So finding this creative way of handling what I'm dealing with is what worked for me.

Nora McInerny:

No one can feel physically what you are feeling. But I felt so connected to you viewing your art. Tell me about sharing your art and how that has connected you to people who have lived similar experiences to yourself.

Priya Rama:

So doing this art for me has been a full circle life moment for me, right? Because I have always been a visual learner, I've always been a visual person and that is how I learn and understand. Image is how I absorb the world around me.

Painting this imagery, like you said, is very, very natural to me because it's always been a part of me. And when I started painting these, I didn't have the intent to go share it with the wider world, it was something I was doing for myself. But then a few months down the line, a friend who was organizing some local event said, "Why don't you share some of this work?" And it kind of ballooned and grew out of that very, okay, I'll do it, casual kind of decision. Because now when I go share it, I find people respond to it at such an emotional level. So I go do art fairs and art shows, and some of these paintings have drawn people in to the exact painting. It's like something they have experienced inside their mind. And that blows my mind because how are two bodies with two different biological chemical systems, brains, who are experiencing a common thing like a migraine attack.

And so for me, the reason I continue to do this is to be able to talk to people and share my experiences. Because I feel like this is my purpose, this is why I've been given this. All the years that I've questioned, why me? I know now if I can make somebody feel a little better, then that's what I'm supposed to do. And sharing my work also offers validation to people with migraine and Chronic Migraine. No one believes them and they were unable to express exactly what they were feeling. But now they're seeing in my physical works, their experiences. It is very validating for me, as well.

Nora McInerny:

How has your family responded to your art?

Priya Rama:

So my family, especially my husband and my kids, they had no idea that this is what I see. They have known me to walk around the house with dark glasses, close all the blinds, sit with ice packs. But they didn't know what was going on inside my head. And of course, I didn't tell them either because it had always happened to me. But now that I paint them, they're blown away too. And I'm grateful to have this ability to be able to express it. Like I have the gift or the talent or the skill to be able to do that.

Nora McInerny:

Yeah. It's so fascinating to me that even two people can experience this so differently.

Priya Rama:

What you brought up is something that not many people know. Two people experience it differently, but more importantly, me. Every migraine attack is different. So it's not the same. So even for me, the same individual, the migraine attacks present themselves in different ways. Not all the symptoms happen with every migraine attack. So that is why it is so difficult to predict how it may play out.

Nora McInerny:

So Priya, you have such a beautiful energy. You really do. Do you feel hopeful?

Priya Rama:

Absolutely. I'm a glass half full kind of girl. I do not let this get me down at all because what's the point of it? As long as I'm around, I'm going to be happy, smile, enjoy life whenever I can. And make other people happy too, or at least not get annoyed with me.

Nora McInerny:

That's a good goal. All right, we end the show by asking our guests to share a message for other people who are living with Chronic Migraine. Is there a message that you would like to leave the audience with?

Priya Rama:

Oh, absolutely. My biggest message is to engage with creativity in whatever shape or form. Music, painting, drawing, doodling, anything. And when I say engage with creativity, it is not with a purpose for a finished product. It is just to do something in that moment. Because in my experience, I've found doing something with your hands sort of awakens certain senses and brings about this change to how you feel. So that's my message. Do something creative.

Nora McInerny:

Do it for the sake of doing it.

Priya Rama:

Exactly.

Nora McInerny:

Thanks for listening to The Head Start: Embracing the Journey. We hope you found something worthwhile here with us today. A new coping strategy, a relatable story, the comfort of knowing you're not alone. I am so happy to be a part of creating this community for all of us and especially for people living with Chronic Migraine. If you haven't found a treatment plan that is working for you, please do reach out to your headache specialist to explore your options. I truly hope this has helped you find a bit of comfort and maybe a smile, maybe. See you next episode and stay tuned for more important safety information.

The Head Start: Embracing the Journey is hosted by myself, Nora McInerny, executive produced by Ivan Sheehan, our head of post-production is James Foster, our researcher is Ciara Kaiser, and our writer is John Irwin. Original music by SoundCat Productions and Artlist.

Please see additional Important Safety Information, including Boxed Warning, within this podcast or on the website below.