In early October I was invited, through my Neurologists practice, to participate in an educational panel for the Pharma company that is releasing Emgality.
This invite was the like the Golden Globes to me because it was the intersection of the life I lead now (aka – headache hell) and the life I am working towards leading (aka – public speaker, educator – with or without headache). To say I was excited was an understatement but what really went down was beyond what I could have anticipated.
As I headed out to Las Vegas I was under the impression (no idea why) that I would be speaking with three other patients to a group of about 70-80 people. Less than I had hoped for but really, the chance to speak to 5 people on this topic (really even just 1) is enough motivation for me. You can read all about my Las Vegas experience in another post ((https://mysoulscircus.com/what-happens-in-vegas/ )) but what I want to write about today is the conference…the actual event and all the people that I met that day and then next and even days after the event.
Disclaimer: Eli Lilly did not pay me to come and speak at their conference. A group that really wants to help educate Pharmaceutical companies, Doctors, Patients and the world at large did…so thank you to that group for this great chance.
Now, onto the real event. On the night before the event, I had the chance to meet with the our portions organizers and the three other patients that would be on my panel. Within 5 meetings of meeting the other three – I knew these people were my tribe. We spoke the same language, shared the same concerns and knew each others pains. That alone was worth the cross country trek for me but it gets so much better.
My organizers gals, 3 for Lilly and one for the other group were beyond helpful. They thought of things I had not even though of for the comfort of the us (the 4 patients). They wanted our input on the room lighting, the room smell, the chairs on stage the back ground visuals on the stage, and even…what fancy coffee might we want there in the morning. It was about this time that I learned, it would not be 70-80 people in the audience but 700-800. The room was huge with rows and rows of chairs but not once that night or the next morning did I feel at all nervous or concerned about getting on that stage.
The next morning as enjoyed breakfast and my specialty coffee (thank you Migrage tech fellow who did that for us) with the other patients my admiration and respect for them continued to grow. As we were mic’d up before being escorted back stage, I learned that our organizer gals had asked all attendees (remember that is like 800 people) to refrain from wearing strong scents to this event. Really, that seems like a lot to ask…but they did…and they did it for us.
Our time on stage was entirely too short in my opinion as the hour passed in what seems like seconds. I learned that “R” had to retire early because of this disease. He flies all the way from Florida to see my same Neurologist. I thought I had it rough driving 2.5 hours each way. I learned that “B” had to give up her Vet hospital due to this disease. I could see from her facial expressions as she spoke how deep that impacted her heart and I could also tell she was in severe pain, at that moment, from a migraine attack. I learned the “M”, who is a Doctor, just received her headache specialist designation and is opening a clinic in her home state so she can help others. I have MAD respect for these people. I learned that I was not alone. I learned from my three new friends that my mind is not crazy and that the crazy things I have to do to live are part of life for them too. I can not express enough through words alone how much connecting with this tribe did for my soul…for my desire to purse this passion of education, communication and general community for those of us suffering and attempting to live through it. If the three of you ever read this, know that you impacted me deeply and profoundly and I will forever be grateful.
After our panel discussion we were escorted back to the green room to have our mic’s removed. Our Neurologists were waiting for us there – HOW COOL. I had the chance to hug Coop (that is what I call my Neurologist because he is that cool and awesome – Coop) and thank him for all the hope he has brought into my life. Never underestimate the happiness that can come to you from telling someone else how awesome they are and how glad you are that they are in your life. We had 15 minutes to chat, make a restroom run and be back for seating for the next panel, in which our Neurologist would be speaking. Let me just say, I have never been so excited to NOT make it to the bathroom. I was stopped time and time again by people that were impacted by the stories shared. People thanking me for my willingness to be there, to share and provide insight into my life so they could better understand what they were out there fighting for (US!!). Every person made me feel validated, sane, courageous and all those other feelings that people who suffer in silence rarely get to feel. I had not even tried the medication for which this conference was taking place and yet I was welcomed with open arms, interest and loads of empathy.
When you go through life with many people shrugging you off like you only have a “headache” or are faking it to get out of something (school, work, social function, etc..) having a large group not only believe in you but actively support you – was AMAZING. And even more amazing is that all these people were gearing up to head out and support the entire migraine community – not just me or the 4 of us. My heart overflowed with hope!
I headed back to Michigan the next afternoon but not without several “stops” along the way. As I wrapped things up at the hotel, I was stopped by people who were in attendance the day before. I was asked questions and thanked for my participation. At the Las Vegas airport, I was stopped by people who were in attendance. At the lunch spot in the Minneapolis airport, at the gate and even at the baggage claim in Grand Rapids, Michigan at nearly midnight on a Friday night, I was stopped. Thank you to everyone of those people who asked a question, who shared a thought, who thanked me – THANK YOU for caring enough to be a warrior for a disease you don’t even have – THANK YOU!
There is no doubt in my mind that I was meant to speak at this conference. The name of the conference was enough to convince me – Live Intentionally!
Every interaction I had though out that trip just reenforced the fact that there are people (warriors) out there fighting for me, fighting for us, so we can have a better life, so we can rule the world and spread our sparkle everywhere.
Sparkle on all you warriors, sparkle on…