Headache on the Hill 2018: One Migraineur's Experience
The opportunity to jump on a plane on a Monday morning at 6:30AM is not a thought that I relish in. In fact, as a "spoonie", anything that disrupts my normal routine is usually viewed as the enemy. However, on February 12th, 2018, I woke up at 4:15AM to begin a journey that would change my life.
When I boarded AA2357 from DFW to IAD, I did not expect the life changing results of the experience to follow. To be honest, I was proud, which made me naive to the true impact of a large scale advocacy event. This is not in anyway to be self-deprecating, but honestly, this was not my first rodeo. I have been actively advocating for others since I was in middle school. That became a career path for me after I graduate summa cum laude from Sam Houston State University with my BA in Victim Studies with a minor in legal studies. I was ready to set the world on fire... And... As most tales of most great heroines go, the world clobbered me.
I had spent 3 years in school pulling 18 hour days, and had let my disability get so far beyond my control, that I ended up in a 742 day migraine cycle. In January of 2016, I gave up on "adulting" and returned to the safety and security of academia. I began my Masters in Social Work.
My focus was on healthcare with the intention to go into the broken system that had given up on me, and fix it. Again, fate had other plans. Just 3 months into my studies, under the guidance of my amazing mentor, I made the jump from "direct practice" (working with clients one-on-one) to a larger calling in "community and administrative practice"(a subsection of social work focusing on research, funding, advocacy, and social justice).
I have focused on issues including: domestic violence, poverty, homelessness, and food insecurity; but in the back of my mind, I always knew I would need to go back and start working for my people in the disabled community. I started in 2016 by assisting a few students on Facebook in obtaining accommodations on their campus, and that has blossomed into a major passion project in my life.
Any disabled student in need who reaches out to me via Facebook is inevitable enveloped into my network of personal meets professional advocacy. You have to teach a man to fish, right? I do whatever I can to assist.
Most of the people who contact me just need guidance, some need phone calls made to their campus, some need a script on how to speak with their doctor about obtaining an official letter about their diagnosis, and all of them need a friend and peer who has done it to message when it is hard or it breaks you down. I like to believe that I am that person.
Therefore in October of 2017, it was recommended to me to complete an application through the American Migraine Foundation to join then Alliance for Headache Disorder Advocates on Capitol Hill for an annual event called Headache on the Hill. When I typed up that application, the only thought in my head is that "there must be a thousand people more qualified than I am", but on December 24th, 2017, I got the BEST Christmas gift, a "yes". I was being sponsored to follow my passion and advocate for my people.
Sooooo... Back to the flight....
I "got off the plane at LAX", just kidding, IAD airport in DC. My migraine had gone from a 3 on the pain scale to a steady 5, but I was still thinking "I can do this". I had studied, made note cards, printed business cards, and read up on our representatives. I was prepared... Well, kind of.
The 3.5 hour meeting to train you to go to Capitol Hill is hard on a "spoonie" like me, so if you're planning on joining us next year as a patient advocate, be prepared! You can hear the compact fluorescent lights, and remember, you'll be exhausted from your journey in. That small or large migraine will spike. I personally spent about 10 minutes of the presentation sick in the women's room. Thank heavens for Odsetron, Keppra, and Diclofenac so that I could stay functional. Simultaneously, it is rewarding and empowering. It really does adequately translate this process and train lay people to be advocates with politicians on Capitol Hill.
I had a blast meeting other patients and learning from their successful experiences, because you never know when you might need a new tool in your "spoonie" toolkit later on down the road. We bonded over medication, inpatient hospital stays, and celebrated stories of success. This is our time!
On Tuesday February 13th, 2018, we went to Capitol Hill. The group represented 42 of the 50 states! Go us!
In the Texas delegation, we had 6 meetings and 4 "drop offs" to make. We met with Senator Cruz himself, and legislative assistance at several offices. The experience was scary, empowering, exhausting, but most of all it was 100% WORTH IT!
Advocating for increased funding for the NIH to not only study migraine, but pain disorders in general, was the perfect mission for this group. Simultaneously, the hope was for effective research and the development of new pain treatments to end the opioid crisis that so many Americans have been impacted by!
As my migraine pain increased exponentially while my plane defended back into DFW, I realized that at the end of the day, experience is how we grow, so I wanted to share a bit of advice with anyone wanting to follow in this path next year:
- You should!
- Be prepared with your emergency migraine kits, because this event is a trigger.
- Come with an open mind and heart.
- Bring your passion.
- If you're from the south, bring your warmest clothes.
- Bring snacks if you have dietary restrictions.
- Bring your story!
Advocacy is simultaneously the most personal and public thing you will ever get to be a part of. Today, I laughed and cried. Live in those moments, and know that they're a gift. Finally, be prepared for the deluge of emotion that will hit after the event. This is common any time we have to face the reality of our disabilities. However, it can be amplified when we are compelled to share our experiences to impact change.
Whether we succeed at the bill through congress or not, you'll survive a myriad of emotions. Feel them, because they matter.
Sending you love,
Katie Pearson
Disability Accommodations Advocate
MSW Student
the.technicolor.zebra@gmail.com
