After learning of Senator McCain’s passing yesterday, it triggered reflection and some sadness. Let me explain.
I love encouraging and sharing support. I believe it is what I was created to do, however this calling comes with a price. When you help those who are living with a disease that has no cure building relationships is a risk. No cure means many, even with all the best efforts, still die. Everyone is going to die eventually, but brain tumors are brutal. I believe hope never grows old so no matter the type of tumor, I go into the relationship with HOPE.
In my 20 years on this brain tumor journey, A LOT of my brain buddies, and even some of my family have passed away from brain tumors. In a few days, it will mark the anniversary of my first exposure to death by GBM. It will be 26 years since my Grandma died. The timing was bittersweet.
Last night after about 2 hours of the news programs and memorials dedicated to a life lived, I had to take a break and took a walk. I happen to be alone this weekend, while the husband is out of town, so things were quiet causing even deeper reflection as my thoughts drifted down memory lane.
I recall the very first conference I attended in 2000. I met a girl named Julie Guess. We hung out during the weekend and stayed in touch via email. It was odd to me at the time, when without warning or explanation, I stopped getting messages. Back then the NBTF used to send newsletters via snail mail. I don’t recall the date but I remember reading an article in the newsletter about some little girls fundraising in memory of their momma, Julie. That was the first person I felt the pain of death outside of my grandma. Oh, how I cried! It was such a shock. How could this happen? Was I next?
There is my beloved friend, David M Bailey, the man who shared hope with thousands across the world through his music. He was given weeks to live and lived 14-years. How is it possible he has been gone for 8 years this October? Then there is My Braingl, Christina, a 10 year survivor, gone 6 years this month. These stories are so VIVID! Just like yesterday. How can life just go on?
I have attended many conferences through the years, and my most frequented one is the Florida Brain Tumor Association. I attended FBTA annually from 2001 -2012 and on occasion their fundraisers. Attending events like that you build amazing relationships and the chance to, what I like to call “growing your NEW FAMILY”. When you go all in for a cause where people are sick with a disease that has no cure you open yourself up to a life of love and memories but also lots of loss. I wouldn’t change what I do for a moment, but I can’t tell a lie – it hurts. When you’re all in then you’re open for heartache.
I want to take this moment to remember some friends whom I have lost to just GBM alone (not including the loss I have felt from other tumor types or death by other causes): Jack O, Mr. Pappa, Mo O, Steve H, Dick A, Mark W, Bill A, Greg S, Tony W, Jennifer S, Deni A, Shelly C, Craig P, Donna A, Ken J, Randy R, David M, Canada Bob, Bob M, Gene Snyder, Jason W, Rita A , Kristie B, Bob G, Ronnie G, Micheal Salazar, Beth Glassman, D Lucht, Amy, Dru, Dana, John, Jeffrey, Ruben, Gato (For the families I didn’t mention it’s not intentional). You are missed but will NEVER be forgotten. Friends never end and I still communicate with a lot of the families. Thank goodness for social media.
I am sure that the passing of the Senator has opened wounds for many. I feel for all of you and leave you with this — May LOVE, not loss be what you remember most.