Last night was absolutely amazing. The place was filled with celebrities and ALS families, such a cool experience. Y’all know I’m social and extremely active on social media, but nothing replaces the love in a hug from someone who knows exactly what you and your family is going through.
“The club that no one wants to belong to is incredibly bonding. Perhaps because none of us wanted to join, we cling to one another.” – Option B, Sheryl Sandberg
Kenneth and I had the opportunity to meet people from near and far that are connected to ALS in some form or fashion. We got to love on lots of PALS (people with ALS), share familiar experiences, catch up on life and love with friends. It was truly a life changing experience for both of us.
Prior to the Ice Bucket Challenge in 2014, PALS were isolated in their diagnosis. ALS wasn’t a disease that many people knew about or had even heard of, so many dealt with the effects privately. To each their own, but for me, it helps knowing there is a bustling community of love and support right at my finger tips. I use my quarterly clinic appointments as support group, I connect with PALS and caregivers with the hopes of learning from and supporting each other in this journey. For some it’s terrifying to see the progression of this disease in others, to preview what’s to come, or to be forced into a place of comparison and evaluation.
“Brave is listening instead of talking. Brave is articulating my feelings, especially when the feelings are sad or scared or fragile instead of confident or happy or light.” – Present over Perfect, Shauna Niequist
Last night was a perfect opportunity to listen and learn, to share our feelings of fear for the future, to be reassured that God is in control of it all. This community of misfits is family, and Kenneth and I are blessed to be a part of it. It’s easy to mistake my optimism as being naive, or as a portrayal of invincibility, but I assure you that is not the case. We are aware of the road before us, the hardships that are on their way as my body continues to deteriorate, and we know this is going to get ugly, BUT seeing families farther into the progression and still living life, loving on others, and embracing this community is comforting.
God has a purpose for my diagnosis, and though I’d love to see the manuscript, I am here with an open mind, an open heart, and open arms to embrace those he places in our path. Thankfully, Kenneth is a good sport and is willing to cannonball into this community with me.
“What matters is whether it makes your life better, whether it makes you better.” – The daily stoic, Ryan Holiday and Stephen Hanselman.
Our life is better for going last night.