Embracing a new passion for advocacy.
Mia Maysack can still remember the cold air circulating in the car on the way to the hospital. Her dad was driving, the windows were down, and the music was blasting; he was trying to keep her awake. Her head felt like it was going to explode.
Mia was 10 years old. She’d been diagnosed with “swimmer’s ear” earlier that day, but by evening, she was unable to move parts of her body. Her parents rushed her to the hospital, where they learned her ear infection had morphed into bacterial meningitis. Mia slipped into a coma shortly after arriving at the hospital. An infection in the mastoid part of her temporal bone, located near the base of the skull, required extremely specialized surgery. The infection was so bad that she had to have two emergency mastoidectomies, to remove the infected bone.
Though she survived the deadly infection, Mia’s life was never the same. She soon found she couldn’t dive or swim due to the pain and discomfort she was often experiencing. She began to experience cluster headache attacks, which were initially dismissed as hormonal. Doctors eventually diagnosed her with chronic post-bacterial meningitis headache. Today, most of her neurological symptoms are classified under traumatic brain injury (TBI).
“I experience head pain to some extent every day, all day long,” she says.
Once a nurse, always a nurse
With special accommodations, Mia, now 30, was able to graduate from high school. She started nursing school, and began working in a hospital as part of her program. Seeing patients who were having their absolute worst days helped Mia stay humble about her own pain. But her migraine disease was still very real, and she struggled to find a nursing job that could accommodate her pain.
“Migraine is like being victimized by your own body,” she says. “It zaps you of energy and demands to be the center of attention all the time.”
She tried working in hospice, then in a nursing home, and then as an in-home care nurse, hoping she wouldn’t have to give up a job she loved. But they all proved too difficult with her pain, which now also includes fibromyalgia and arthritis.
“I attempted schools, private academies, and professional nannying, but alas, the same issues occurred,” she says. “So after the final hospital I worked at wouldn’t accommodate things I needed—such as more frequent breaks or shorter shifts—I was forced to bid adieu to both ‘traditional’ career paths and begin paving a new one of my own.”
Mia doesn’t like to say that she “used to be” a nurse: “I am a nurse, I just no longer work in that field,” she says. “My pain has not taken my previous accomplishments away—it has only changed what I am able to do with them now. All of these attempts—I’m not going to call them failures, because they definitely weren’t failures—all had their place. They all led me to the person I am now.”
Finding purpose in advocacy
Mia began to feel as though she was approaching both her life and her career the wrong way… she was setting herself up for failure. She was fixating on pain, complications, and the number of different career hurdles, which she admits can be as crippling as the physical pain itself. And then, almost by accident, she stumbled upon the Alliance for Headache Disorders Advocacy’s (AHDA) Headache on the Hill, an advocacy event in Washington, D.C., that brings together patients, caregivers, and health care providers together to speak to their representatives about research funding and accommodation policies for all headache diseases.
“I had no idea that it would ultimately shape my life from then on,” she says.
Mia, one of six children, credits her mom with being the first person to teach her the importance of advocacy. She remembers her mom spending hours on the phone with insurance companies, and jumping through any necessary hoops to get her in with doctors. Mia attended her first Headache on the Hill in February 2018; it was her first event with the headache and migraine community.
Her love of advocacy and working with others in the chronic pain and illness community grew from there. She founded a support community called Keepin’ Our Heads Up, which bears the mission statement, “Aiming to spread hope while eliminating isolation.” She also launched Peace & Love, a holistic health practice. Mia facilitates an in-person and two over-the-phone support groups every month through the U.S. Pain Foundation program, Pain Connection.
“In order to support others, you first have to support yourself and believe in what you are doing for yourself,” she says. “It takes everything I have to show up and do these things, but everything I have gone through in my life has given me a new purpose and has pushed me to find my calling. I found that in facilitating support groups and teaching others about the importance of support, self-care, and self-love.”
Accepting the pain
Today, Mia has accepted that migraine disease, which she’s battled for 20 years, may well be a lifelong companion.
“I’ll never give up the idea of less painful days ahead for me, but as of now, this is how things are,” she says.
“I don’t consume myself in seeking out every last possible thing anymore because spending more time in a doctor’s office than anywhere else—insurance hoops, referral mishaps, hold music for call backs, not being called back, the smell of sterilization, repeating your history, answering the same questions—it’s taken away too much and given back too little.
Instead, she says she now considers self-care a full-time job. She manages her pain with a variety of treatments, from medical cannabis to massage, movement, and good sleep hygiene. Holistic medicine, in general, has brought the most relief. Learning to listen to her body and her mind helped her turn a corner in her pain journey.
“There has never been an easy part of my story but that’s not how I choose to see it or share it,” she says. “After so many years of fighting against this pain, battling the hurt, being at war with inner turmoil, and attempting to destroy it, I finally just listened. Now there is a mutually respectful relationship—sometimes the ailments get rude, but I tend to them, honor where I need to be, take care, and simply treat myself the way I deserve.”
Mia has never wanted her diagnosis to be her identity, but she’s happy to define herself by the actions it’s driven her to take. Whether she’s attending meetings at the highest levels of government or simply signing petitions from bed, she is grateful for the identity she has been able to cultivate through her experiences. “I believe everything I went through was to get me to a place where I can give back,” she says. “To simply show up for as many people as I can, the best way that I can.”
The opportunities to be an advocate and a support system for other headache and migraine warriors, she says, “have allowed me to be a person I never dreamed I’d be. You have to let go of the way you thought everything would turn out and make room for how it turned out—and live that life to the fullest.”
— by Michaela O’Connor