Guest blogger Sarah Whitlock of Brooklyn, NY, shares her experience being a caregiver to a family member with a brain tumor. Sarah is captain for team Mark’s Mob at the New York Brain Tumor Walk. The following is adapted from a speech she delivered at the 2014 New York Brain Tumor Walk and is Sarah’s point of view; the author and the National Brain Tumor Society acknowledge that everybody’s journey and perspective can differ.
I became involved with the National Brain Tumor Society shortly after my brother Mark was diagnosed with a brain tumor in 2008. The connection and community that the National Brain Tumor Society offered us as a family forever changed our lives, and I’ve been involved with the planning committee for the New York Brain Tumor Walk ever since.
I am so very honored to share with members of the brain tumor community my journey of being a caregiver. Because it is a journey, and it never really ends. Because once you’re a caregiver for a loved one with a brain tumor, you’re forever a caregiver. That role is yours to keep.
My brother Mark died in 2010. He was 26 years old. The 18 months he was sick forever changed my life, and though I miss my brother every single second of every day, I have always been and always will be grateful for the time we shared together during his illness. Every second of those 18 months was equal to days or weeks of our normal, cancer-free lives before his diagnosis. That time will always be precious to me.
But I know that’s not true for every caregiver, at least not all the time. For some, the time spent caring for a loved one with such a difficult diagnosis is incredibly challenging, stressful, scary, and overwhelming. Caregivers are often challenged with the task of remaining positive and reflecting hope while managing the most difficult treatment regiments. Being a caregiver is standing beside your loved one through all the appointments, conversations with doctors, hours of treatment, through the ups and downs, the tears and the laughs, the fear and the optimism. Being a caregiver is all-consuming and sometimes terrifying. It’s frustrating, aggravating, and agonizing during times when things don’t go as planned. It’s certainly not for the faint of heart.
But it’s also extraordinary.
Being a caregiver is listening, praying, hoping, and inspiring. It’s striving to discover solutions where there aren’t any, seeking answers when you’re told there are none, and finding hope – some small crack in the overbearing shadow of cancer where you can let the light in.
Being a caregiver is powerful.
It is the chance to forever change the experience of your loved one so that they can fill their days with the love of those around them.
But being a caregiver doesn’t mean you have to know all the answers. It isn’t being an expert or knowing what to do all the time. It isn’t always being strong when you honestly don’t know that you can be. Being a caregiver isn’t just being a rock; it isn’t fighting your loved one’s battle for them; it isn’t just remaining calm when all you want to do is cry. Or scream.
Being a caregiver sometimes also means letting go.
Sometimes the very best thing you can do for your loved one is simply be there to enjoy the time. Letting go gives you the freedom to just live, to appreciate the small parts of your day with your loved one that make your time special. That’s what this journey is about. It’s finding time when you can let go and just embrace the moment. It’s looking for some small space inside your busy day where you can share hope, share love, and share the time. It’s being together on this journey. Because that’s what makes caregiving so powerful and life changing. It’s the time you’re sharing that you wouldn’t otherwise have if this disease didn’t find it’s way into your life. Caregivers are the reason this time can be so very meaningful. You are on this journey together, so let it change your life.