Raising awareness and spreading hope – these are the two things that, as a brain tumor survivor, I hope to accomplish these days. As I wrote about in a previous entry, Broca’s Area, a fusion/hip-hop band had their CD release party this past Thursday. A packed house came to watch the band debut their album titled Clarity. The night was full of great music (take a listen to Space, one of their original singles), an amazing live drawing capturing the night’s vibe and a laser show. It was a wild Thursday night (for me, anyway). Despite all the obvious revelry, the intangibles stood out to me most.
Over the years, it has become abundantly clear to me that my story is not only mine; I have shared every step of this journey with my family. It was them who watched me spend weeks and months in the neuro-ICU and rehab. It was them who nursed me back to health. And it is still them who support me through every moment. Words cannot express the pride I feel when I see how everyone has taken something so terrible and turned it into something positive.
When my brother Stephen came to me with the idea of donating a portion of CD sales to finding the cure and helping better the lives of those in need, I was honored and knew just where to turn. One day in 2014, I was home exploring ways to connect with other brain tumor patients and advocates, when I happened upon the CTBTA website. Within days of filling out a contact form, I was having coffee with the Executive Director and another Board member, sharing my story and ideas. They welcomed me with open arms. From that moment on, I have felt a renewed sense of purpose.
For me, the night was such a beautiful melding of my family who has been there from day one, friends and the family I’ve found in the CTBTA. The pride I felt watching my brother and his bandmates killing it on the stage was almost overwhelming – knowing how much work went it to this, not only for themselves, but for others is a true testament to how much we can accomplish. To everyone who purchased a CD at Black Eyed Sally’s, or who purchased one previously or since then, we thank you! To my new friends at Carla’s Pasta who have shown tremendous support and generosity, we thank you. Because of all of you, finding effective treatments and the cure to brain tumors and brain cancer can someday be made possible.
Equally as exciting as watching the show was witnessing the spirit of my fellow survivors and caretakers. As has been discussed over and over on this blog, a brain tumor diagnosis is devastating for the patient and caretakers. But with strong spirits and perseverance, any obstacle can be overcome. I send a big thank you to Susan, David, Tracey, Greg, Maria and Kim for being there with us on this special night. Your enthusiasm and support are the reason that I volunteered and am now a board member of the CTBTA. The passion that you have for this cause is unbelievable and inspiring. Each of our stories is special and unique in their own way, but we are all connected by one common denominator.
For Stephen, music and this band were his clarity during a tough time. For me, family and realizing what truly matters in life is my clarity and what gives me the drive to carry on and succeed day-to-day. As I’ve explained before, music has also served as my clarity. And as you may or may not have noticed, I write these posts based on music and songs. So in case you missed it, mark your calendars for September 19th and join us for the Second Annual Give Back Music Festival: Brainstormin’ to benefit The Cusano Family Brain Tumor Fund at the Yale Brain Tumor Center. Let’s continue to focus on the good – let the music, laughs, and some cold beer bring some clarity to and hope for this devastating illness and those living through it.