“Isn’t the trail of our relationships the time it takes for the heart to practice its part in the movement we call Love?” asks Mark Nepo in “The Book of Awakening,” a collection of daily readings I’ve read every single day for 3 years.
This is the story of how my chronic intractable migraine has allowed me to grow, and how my condition has also helped me stop protecting my relationships, so they could grow into true connections and create a trail of love that I embrace.
I’ve had migraine for most of my life. When I had episodic migraine, my symptoms were nausea, vomiting, throbbing pain, and light sensitivity. I would lie down in the dark, losing chunks of time.
What I didn’t realize was that my body and emotions were asking me to slow down, to take a deep look within. But I wasn’t listening — until just over 2 years ago, when my body screamed.
Frequent migraine episodes led to three emergency room visits and two hospital stays. One of them lasted more than 2 weeks.
When I left the hospital, I was still in pain, and the migraine episode that landed me in the hospital persisted for more than 9 months. I remember asking if I was going to be diagnosed with chronic migraine. I was so fearful of that term. One amazing physician assistant replied, “Well, Megan, we hope not.”
By the time I left the hospital, I was diagnosed with chronic intractable migraine.
My current treatment consists of three preventive medications plus Botox for migraine, a diet that avoids my migraine food triggers, supplements, daily meditation, and therapy.
I still have two flares a week, with some lasting 2, 3, or 9 days, but I have less pain and I’m more in control, allowing me to enjoy life to its fullest.
I’m a believer, a warrior, and I’ll always strive for improvement, but I’ve learned to be thankful for the present moment, to be open to vulnerability, and to cherish my honest relationships.
Even with managed chronic migraine, I’m still a filmmaker, camera operator, educator, dancer, daughter, sister, partner, and — my greatest joy — an aunt to two young nieces.
When I had episodic migraine, I had to cancel plans all the time.
I’m a highly active, overachieving perfectionist and social butterfly. So, when I couldn’t participate with my loved ones or was the cause of altered plans, I was devastated. But I was always able to jump right back into life when I felt better, so I often didn’t share my symptoms with anyone.
But when my intractable episodes started, I couldn’t work, dance, or socialize the way I had before.
My family, friends, and colleagues called to check on me, but I hid, hoping that by the time I emerged from my darkness, I’d be better.
I was depressed. I didn’t want them to see me like that, and I didn’t want my relationships with them to change. I worried that my partner would leave me because I was too much to bear, and I worried I wouldn’t get hired because I seemed too weak.
I thought that if I hid long enough, my condition would improve and I’d get back to life just like it was before, and no one would know the difference.
I didn’t ask for help, and I hid the severity of my pain.
Until, eventually, the migraine episode that I had 2 years ago broke me open, and I realized I needed to bring love and honesty into my life.
I recognized that I had to love myself to the fullest, and from that, I also learned to love my migraine for what it has taught me.
“To solely attempt to love others, without first loving yourself, is to build a home without a strong foundation” is a quote I love by Yung Pueblo. Without facing the challenges of my migraine, I would’ve feared change, not letting life unfold and not fully letting people in, not building my foundation.
One of the relationships that has grown the most through the progression of my condition is the one with my dad.
He held my hand during a panic attack. He and my stepmom sat next to me when I injected a new preventive medication into my thigh for the first time, and both joined me filling in coloring books when that’s all I could do to stop shaking from anxiety.
I’ve learned to have more compassion for myself, to trust that this is my journey for a reason.
I now ask my family not to always ask how I’m feeling. This helps me remember there’s more to me than migraine, and a tip I highly recommend.
One time I even took a “vacation” from my migraine, not talking about it or my treatments for a week. I found myself enjoying my time with family and friends so much more.
I dissociate from the pain by taking mindfulness walks, pointing out things I see like a kid would. I refer to my migraine as “my Porkchop,” a tool I learned from the mind-body app Curable.
I also recommend visualizing your pain. When I first tried doing this, the pain was just a color, a deep red that was entering one ear and leaving out the other. Now it’s a vibrant, luscious green.
Once, a visualization came to me during one of my intractable episodes. There were two of me: One was in pain, but the other was healed, and we walked alongside each other on the beach.
I routinely return to this visualization. The healed version of me guides my in-pain self to shade, and we rest with my mom.
This experience has also changed my relationship with my mother, who lost her battle with breast cancer when I was 16. I was so young that I didn’t fully process the loss at the time.
And somehow, during my intractable migraine journey, I broke open and saw her. I wrote her letters, talked with her during meditations, and asked her for help.
Eventually, I started to feel her smiling down at me, holding my hand.
One of the biggest changes I’ve made is talking about my migraine more. I’m still careful not to let it cloud my entire language, but in some ways I’ve learned to normalize it.
This way, migraine is less intimidating, less like a scary monster in the middle of the night and more like a season of my life that, just like everything else, will change.
I also started a separate Instagram account, @healwithmeg, which I created as an outlet and positive space.
Ironically, even though this account is public, I find that I can share more honest feelings about my experience with migraine than I can with my personal account, since my followers are on similar journeys.
But talking with young kids about migraine is something I think about every time I’m with my nieces, and as I discuss what it will be like being a mother with chronic pain.
While in the past I protected my nieces entirely from my condition, I’ve slowly started to share. They now talk about foods I can eat. They know the ice hats are for my headaches and often like to wear them so they can be like me.
During one flare, I still wanted to go over to their house, so my sister kindly picked me up. When she told her daughters she was going to pick me up, one of my nieces actually pictured my sister literally picking me up, that I was too sick to walk to the car on my own.
Yet I’ve learned to see the silver lining in this. I’m here to help teach them empathy, sympathy, and compassion. I show them on a daily basis, along with their family, that strength can be vulnerable.
It’s always going to sting when I can’t do what I want or can’t participate fully. And this is a challenge that will continue as I plan to become a mother myself one day.
Even if a family member is fully accepting of plans needing to change, I’m often the one who is most upset. But it is in those times that I have to be most present, because I’m unsure what the next day will hold.
I’ve learned that it’s a process, to accept the flow of life.
Someone once told me that “chronic intractable” are the two worst words in the English language.
And while there are moments, hours, days, and weeks when I’m enduring a refractory migraine episode and hating those words, I’ve come to love them, appreciate them, and thank them for what they’ve taught me.
I am thankful that I can sit here and write this in my backyard with sun on my face and tears of gratitude in my eyes, and know that I am always reaching to the sky like a flower with strong roots and a never-ending quest for growth. I am thankful that you can read these words and hopefully learn from my experience.
I thank you, and I thank my chronic, intractable Porkchop, in all its stubbornness and beauty.
Megan Donnelly, 38, is a cinematographer and educator who lives in Los Angeles and Chicago. She was diagnosed with chronic intractable migraine at 35. You can follow her journey of healing on Instagram.