Category: Coping

Community, Coping

Calming My Storm: Aanya Patel copes with migraine & TBI by starting a nonprofit

Kerrie Smyres

Aanya Patel was 13 when she fell on the stairs at her home and developed post-concussion syndrome. Nine months later, she was diagnosed with migraine. Now 16, Aanya is thriving as high school junior and an advocate for people recovering from traumatic brain injuries and who have migraine.

Calming My Storm, the unincorporated nonprofit that Aanya founded, is a big part of her advocacy work. The organization seeks to help people with concussions and migraine thrive by offering expert interviews and advice, educational resources, and personal stories of people recovering from concussions and/or living with migraine.

Getting to the “why” behind treatments

Calming My Storm is “built around the idea that if you understand your treatments, then you’ll be more inclined to do it,” Aanya said. She has firsthand experience with this. “Throughout my treatments, I wouldn’t really embrace them until I started asking questions until I understood how it worked. I distinctly remember sitting in PT, and being like, I don’t want to do this anymore. But I would start asking, Well, why do you want me to do this? Why do you want me to stand on my leg? Why do you want me to do this or that? And then my PT was super nice. And she’d explain it.” And that was enough to convince Aanya of the value of physical therapy and want to know more about the “why” behind all of her treatments.

A drive to learn more

When she found some relief with a neuromodulation device, she was even more curious about the why. She began interviewing experts at companies that make neuromodulation devices and asking them about efficacy studies and the mechanisms of action. She took the information from these interviews and turned them into blog posts, which was the start of Calming My Storm.

Empathy and understanding

What started as a blog has evolved into an unincorporated non-profit with a team of volunteers of a variety of ages and backgrounds. All the work at Calming My Storm is grounded in empathy and understanding.

“If you have understanding, you’re more empathetic. If you’re more empathetic, you can help people,” Aanya said. “And if you understand what’s happening inside of your body, then you can embrace your therapies and your treatments better, because you just have that understanding of what’s going on inside your brain.”

Expert interviews

The volunteers at Calming My Storm use empathy to increase understanding by interviewing experts about their research. The goal is to make research more accessible to the average person. Women with TBI is a particular interest.

Learning from others with the condition

TBI Roundtable is a new podcast from Calming My Storm. It’s a place for people with concussions and TBI to “talk about their experience in an open and honest way.” Each episodes delves into a specific topic, like living with a TBI as a high school student. In addition to sharing their experiences, guests also talk about specific strategies they’ve found to cope with their condition.

People who have had TBIs can also learn from each other in Letters to My Old Brain. Aanya describes this project:

“When you suffer from a TBI, you don’t know you’re gonna suffer from a TBI. You don’t know your life will be totally changed. And so a lot of people will describe this as their pre-injury self and their post-injury self, they have their old and they have their new normal…. In that moment, their hobbies changed, a lot of things in their lives changed. The idea is, you wrote a letter to your previous self.… It’s almost cathartic. Like, they get to really process what happened to them. And for people who read it, they can be like, ‘Wow, I’m not really alone.’”

Learn more about Aanya

Interviewing Aanya was a pleasure. I was struck by her wisdom, compassion, and ambition. To learn more her injury and diagnosis, what it’s like to navigate high school with post-concussion syndrome and migraine, and her advice for living well with these conditions, you can read my story about her on Migraine.com in Aanya Patel’s Experience With Post-Concussion Syndrome and Migraine.

Photo by Felix Mittermeier on Unsplash 

Coping

Letting go of a comfort

Kerrie Smyres

Until Monday afternoon, I drove a beloved 2005 Subaru Outback. Although I’m not normally sentimental about stuff, I loved that car.

As with so many things in my life, that attachment comes back to migraine-related grief.

My Outback’s story

Hart and I bought the Outback new not long after we moved to Seattle. Outbacks are so common in Seattle that it felt almost like a rite of passage. It was a new model year and caught so much attention that we joked it felt like driving a Ferrari. We had people wave us down to ask about it and one person even did a U-turn and followed us into a parking lot to check it out.

My love for the Outback cannot be separated from my love for Seattle. Which is how this story leads to migraine.

Finding (and losing) my place

Seattle is my place. It has felt like home since the first time I visited as an adult. I feel like I breathe easier whenever I’m there. And 10 months of the year, the weather triggers such frequent migraine attacks that my quality of life plummets. As much as I love it, living there is not worth what it does to my health.

For several years after moving away, visiting even in the sunny months of July and August was just too heart wrenching. I stayed away and took comfort in my car. My memories of that car are so entwined with Seattle that it was like having a little piece of the city with me.

And trying to find it again

I’ve been working on developing a new relationship with Seattle in recent years. A friend finally convinced me that avoiding Seattle was actually making my grief worse, so for several years, I’ve gone for a visit in the summer. (Which is convenient because summer is migraine weather in Phoenix.) I have finally decided that while I will always want more, visting in the summer can be enough.

My continued connection with the Outback is about that wanting more. Even when I wasn’t conscious of it, driving that car gave me a little bit of the comfort that I get in Seattle.

Moving on

When Hart got a new car a few years ago, I began to think it was time for me to get one, too. It felt like time to move on, even though I wasn’t entirely ready. Plus I want something sporty while I’m nimble enough to enjoy it.

For Christmas last year, Hart gave me the promise of a new car when we could figure out a way of buying one that felt safe with my level of COVID isolation. I was moving toward letting go when a neighbor asked if I would consider selling the car. His daughter needed a new car and is headed to snowy country for college, so an Outback is perfect for her.

I love the idea of the car moving onto a new chapter (like in Toy Story, as another friend pointed out). And I’m trying to move on, too. After I shed tears (and had a migraine attack) throughout Monday evening, I happened to see the Outback’s license plate inside the front door. And I thought, “It’s time to find a new relationship with Seattle.”

Building a new relationship

I know my new relationship includes visits in the summer. I’ve already decorated my house in blues and greens to be reminiscent of the nature of the city and filled my yard with lush-looking (low-water) plants. I have some Seattle-related artwork in the house, but I think I need more. Maybe I need a photo of the Outback, too.

I’m not sure what else this new relationship needs, but I trust that I’ll find it.

Coping

What was good about your day?

Kerrie Smyres

After noticing that our evening conversation usually ended up in a muddle of work-related details that neither of us really wanted to rehash, Hart and I changed the daily conversation by changing the question we ask each other. Instead of asking how each other’s day was or what happened that day, we ask what was good about the day.

We noticed a change immediately. Instead of digging into the nitty gritty of the day or focusing on frustrations, we’re both cheered by talking about the good parts of the day. If either of us encountered a major frustration in the day, we still talk about it, but the small irritations rarely get air time. The whole tone of the evening feels different when we start by sharing the good parts of our day.

Although we made this change years ago, it’s been particularly valuable in the last year. When daily life has a constant high-stress undercurrent (with spikes of even higher stress), it can be hard to see the bright spots. Sometimes we have to look extra hard, but we always find them.

I’ve taken to asking friends this same question, usually by text, and it’s been a great way to connect. I started with a friend who has chronic migraine and was going through a particularly rough spell with depression and anxiety on top of it. I know how hard it is to see the good in times like that and was worried she was bogged down by the grief. She appreciated the prompt to look for something positive in the day and now regularly texts me the same question. Sometimes it’s hard to answer, but I’m always grateful for the reminder to look for the good. And now I regularly ask the question of even more friends. It’s a great way to connect and usually provokes a smile.

Why am I telling you this today? Yesterday was a hard day for both Hart and me and we forgot to ask this question. Talking about what was good about our days wouldn’t have negated the bad parts, but we both could have used the levity. I missed it and I felt the heaviness even as I went to sleep. I can’t know for sure if I would have felt lighter if we’d remembered to tell each other the positive parts of our day, but experience shows I probably would have.

What’s been good about your day today?

Photo by Aaron Burden on Unsplash
Coping

I am: Identity and chronic illness

Kerrie Smyres

The emotional weight of migraine has been especially heavy for me in the last month and, really, in the last year. The morphing and unrelenting stress has ratcheted up my migraine attack frequency and the attacks often include depression-like symptoms. My thoughts have swirled around how small my life feels and how much unrealized potential migraine has left me with.

It was the perfect time to watch In & Of Itself, a film adaptation of an off-Broadway show that’s now available on Hulu. This description from Linda Holmes on NPR is better than any summary I could write: “It’s about seeing people and being seen by them, and about how your own narrative of who you are — I AM a novelist, I AM a gamechanger — collides with stories about who you are that you didn’t get to write.”

“I AM” in the quote refers to cards that audience members choose at the start of the show. They are arranged on a wall and include an array of identities a person could align with: tourist, organizer, leader, mother, life of the party, entomologist…

As the identities came up throughout the show, I couldn’t help but wonder which I would choose. Truth-teller, resilient, and authentic were top of mind. But then I thought about what identities others would choose for me. Would sick be at the top of the list? It feels these days like that’s all anyone can see of me. Or is that illness feels like it dominates my life and because it’s all that I see of myself, I’m projecting that onto everyone around me?

I know that if I asked my loved ones to describe me, sick wouldn’t be the first thing anyone said. It would be present, but as an addendum. They’d say I’m a kind, driven optimist whose ambition has been constrained by migraine. Or that I’m so resilient and determined that I’ve learned how to live as well as possible despite the many challenges of chronic migraine. I know this because people have told me so. And yet.

Even though I do believe them, the pall of migraine covers everything right now. I am not migraine. I do not want to be defined by migraine. I felt like I had a good grasp on the difference between migraine and me when I wrote about this very topic on Migraine.com in Is migraine part of my identity? Yet, here I am, just a few months later, feeling flattened by migraine once again.

In & Of Itself reminded me that I am a mass of beliefs, thoughts, concepts, identities. Who others perceive me to be is shaped by their beliefs, thoughts, concepts, identities. No one is only one piece of their lives. No one is truly who others perceive them to be.

I cannot only be migraine even when it feels like it is all that I am. I cannot tell my story without all the pieces of me speaking up. I wouldn’t be sharing my experience with migraine so openly if I weren’t a truth-teller. I wouldn’t feel so connected to my authenticity through words if I weren’t a writer. I wouldn’t have found contentment (most of the time) in a life with chronic migraine if I weren’t so driven (that trait that I grieve being unable to apply to the career I wasn’t able to have).

My therapist would say “I am” is the most important part of the cards. What follows doesn’t matter. We are all worthy of love and belonging simply because we are. That’s where I’m trying to put my thoughts today instead of being bogged down by the details.

I am.

I am.

I am.

Photo by Kristina Tripkovic on Unsplash
Coping, Treatment

Free online course in migraine management begins Jan. 16

Kerrie Smyres

Imagine reducing the severity of your migraine symptoms and/or the intensity of your distress during a migraine attack without medication. Now imagine learning the skills to do so in a free course that you can take from the comfort of your own home.

The Resources for Migraine Management course, offered by the Danielle Byron Henry Migraine Foundation, can help you do exactly that. The free e-course begins this Saturday, January 16. (Registration link: Resources for Migraine Management virtual course registration)

What the Course Teaches

A 10-session online course, Resources for Migraine Management teaches a variety of biobehavioral treatments for migraine management. Each session will teach different methods for managing migraine symptoms and the associated stress and anxiety.

The goals of the program are to:

  • Teach relaxation techniques
  • Teach pain management strategies
  • Learn how to better cope with distressing thoughts and emotions
  • Build resources for greater resilience

About the Teacher

Dan Kaufman, PhD, a research assistant professor in neurology at the University of Utah School of Medicine, teaches the course. A scientist might seem an unusual choice to teach the course, but the story of how he got here is persuasive. In his scientific research on migraine, Dr. Kaufman became curious about the experience of people living with the condition. As he spoke with people to learn about their perspectives, he was compelled to offer help that was more direct than scientific research. He began training in biobehavioral therapies for migraine, which led to him opening a private practice to teach these therapies and, ultimately, to offer this course.

Firsthand Experiences

One woman who participated in last year’s class recently reported that, for the first time in years, she has been migraine-free for months and that her anxiety is virtually gone. While these results aren’t typical, it’s a stunning example of the potential effectiveness of biobehavioral techniques.

While I didn’t take this particular course, I have learned many of these techniques over the years. After the events of 2020 stirred up my stress-triggered migraine attacks, these methods helped me return to my migraine baseline and cope more effectively. They have also been invaluable in teaching me to cope with the onslaught of migraine. Living with chronic migraine is still hard and frustrating, but it is so much easier than before I had these strategies.

Course Logistics

The next class begins on Saturday, January 16. Sessions are on Zoom on the second and fourth Saturday of each month from 1 to 3 p.m. MST. Each one teaches you new skills that build on previous sessions. Classes include opportunities to practice the techniques and get feedback from the instructor, so attendance at the scheduled times is preferred. However, if you’re unable to attend a session live, recorded sessions will available so you can catch up.

Registration

Here’s the link to register: Resources for Migraine Management virtual course registration.

Photo by Oliver Augustijn on Unsplash