Are my eyes deceiving me, or are we really midway through August? This means I’ve been on the job for a month already, and if the first month as Executive Director has taught me anything, it is that this disease is more prevalent and devastating than I think I ever could have imagined.
While fundraising and relationship building is the fun part of the job, I spend a large portion of my time meeting with the various hospitals and talking with patients and caregivers in need of support, and that is the most rewarding. As I said when I first began this blog in 2013, I wanted to share my experience to not only meet fellow brain tumor survivors, but to be a source of hope for those who are going through this today. I have even more admiration for our first Executive Director as I knew the job and duties covered an array of demanding and time-constraining tasks, but every day truly brings something different.
The CTBTA is proud to host the Gray Ribbon Club, a support group for patients and caregivers to meet with us to share our journeys of this disease. We are not doctors and we are not psychologists. But we, at the CTBTA, have all lived this disease and turned it into a positive and we want to share that experience. Our meetings are not held in a sterile, cold hospital, but rather in an inviting setting, such as a coffee shop. During our meeting last week, tears of both sadness and joy were shed, and nobody should feel wrong or bad about doing that. I am overjoyed by the progress of our participants. Witnessing the continued improvement in one particular attendee’s speech and word-finding skills causes the hairs on the back of my neck to rise. Yet, with each celebratory round of applause, there are those raw moments where we share those dark and scary thoughts that nobody likes to talk about, but in this group, we have all been there. As another participant shared, this is a daily battle and we need to find the joy in every day and the little things in life. To this relentless battler – we’re here for you and you should never be afraid to let your guard down amongst us.
In addition to the Gray Ribbon Club, I have enjoyed building a friendship with one particular couple over the past month. As young, thriving adults, their world was turned upside down when they received the diagnosis. By a stroke of luck, we first met at a conference in June and exchanged contact information. Later that month, I was hired in this capacity and we’ve been in constant contact since. On two separate occasions, we met to simply talk and hopefully, allow them to forget about this hell they’ve been in even for a moment. This family is tough and they taught me a lesson – “that there is nobody or anything in this world that can or will bring me down.” You think you had a rough day? Talk about resilience.
When the phone rings or the email notification chimes, I am there to respond and triage the issue, if need be. Things that we all too often take for granted – the privilege to drive and get around; the opportunity to work and provide food for your family; our personalities and behavior, etc. Each journey is different and with the help of our Board, the CTBTA is able to assist and through our patient assistance funds set up through the hospitals, we pride ourselves in offering hope to those in need.
For whatever tomorrow will bring, one thing is for certain – I will go home feeling a sense of pride in helping and working towards our ultimate goal of making Connecticut a center of excellence in brain tumor care. I really couldn’t ask for anything more.