Looking back at my life, I’ve always loved to help people. Growing up, I was a lifeguard. Parents entrusted me with their children’s lives while swimming in a crowed pool. Right out of college, I worked for a bank. I helped people save for their first car, first home, their child’s first savings account, then helped them save for college. Then I worked for a large assisted living company that focused on the Alzheimer’s and Dementia population. I helped those families make the hard decision to move their parent into our “home” when it was time to do so.
My life and career focused on helping others. It made me feel whole at the end of the day. It gave me a purpose to wake up. I loved all of my jobs because the people I helped could feel good about their decisions. They knew I cared about them, and I helped them with decisions that were right for them.
Volunteering with the Migraine Community
At 39 years old, I was diagnosed with a rare cancer in my sinuses and right eye orbit. I went through surgery to remove my tumor, which was the size of a quarter, then I had extensive chemotherapy and radiation to my face, sinuses and eye orbit. I was given two to three years. After 17 years, I am still cancer free. My doctors say my cancer will not come back! Life is good! However, the radiation left me with chronic intractable migraine. I’ve lived every day for the last 17 years with a migraine attack. The radiation that saved my life caused migraine.
I have had wonderful doctors throughout both of my health journeys. My cancer doctors saved my life. My headache specialist is saving my life in a different way. For years, my headache specialist told me about his Miles for Migraine Run/Walk/Relax events. I could never attend because my daughter played lacrosse in high school and college, and she always had a commitment the same day of this event. At one particular appointment, I finally told him I could attend! And I ended up volunteering at the Miles for Migraine Run/Walk/Relax Event in Bergen County, New Jersey. The evening before the event, I met Helen Flood, the event coordinator for Miles for Migraine. We discussed how I would help with registration, distribute medals and water at the end of the race, and interact with the sponsors and participants. I felt excited.
The next morning I woke up bright and early and got decked out in my purple Miles for Migraine t-shirt, leggings and tutu. After putting purple sparkles on my face, I was ready! When I saw Helen that morning, she had a puzzled look on her face. She smiled and said, “Our patient advocate speaker cannot make it this morning. She is having a severe migraine attack.” Helen asked if I would speak to 200+ participants. I was shocked. I had never attended a Miles for Migraine Run/Walk/Relax event. What do patient advocates say? After a short car ride to the event, I planned what to say about my migraine journey. I wondered how I could make something so personal appeal to such a large audience.
At the event, there were friends and families talking, smiling, laughing and enjoying themselves. My reverie was cut short with Helen’s announcement that the event was starting. My stomach churned as I headed to the front of the group. Helen assured me to be myself. I spoke from the heart and told my migraine story — a story that I practiced many times in my head, but I had never told it out loud to anyone. I never thought I would tell it to 200 strangers.
My story included my struggles: depression, disability and leaving my job. I spoke with honesty and conviction, sharing my journey, and speaking about the importance of advocating for migraine disease. Everyone at the event was advocating for themselves. I took my journey one step further by telling my story out loud. After a great round of applause, I sighed a deep breath, and I was done.
Passionate About Volunteering
So many people shared that my story started a fire within them. They said they were going to practice their story and bravely share it too. It was powerful to connect to a community of people with many shared experiences and challenges even though many continue to feel isolated and alone because of the invisibility and stigma of migraine disease. Even though I was initially nervous to share my migraine story, I felt empowered and full of gratitude for the opportunity to connect to and inspire others in the community.
This single experience propelled me to become Miles for Migraine’s volunteer coordinator. I am passionate about volunteering and helping others on their migraine journey. Events like this bring people together who have the same disease. Attendees want to support each other and have a common goal: to find a cure for migraine. This disease left me isolated and alone, and this event gave me my life back. In two short hours my passion was renewed. I no longer felt alone. I no longer felt like my old job had to define me. Today, I am someone new, someone better than I was before.
Things may change. You may not ask for the changes, but what you do with the changes is what matters. I chose to volunteer for Miles for Migraine as well as work for them a few hours a week. It is these volunteering experiences that bring out the fire in me. That fire leads me to the passion I have in my job.
Miles for Migraine
Read More Posts
You’re always told, “If you’re not feeling good, go to the doctor; they’ll take care of you.” For many marginalized groups, that’s…Read More
Ainslie Course experienced her first cluster headache when she was only 19. She was awakened from sleep by intense head pain at…Read More
After living with chronic migraine for more than 25 years and trying more than five dozen medications, I didn’t have much expectation…Read More