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The Power of One Voice Can Make Change!
Posted by:
BeccaJ at NBTS on
April 14, 2011 at
11:21AM UEDT
This week’s story comes to us from Liz, a member of the NBTS Caregiver Support Network. Liz, age 44, was a caregiver for her father who was diagnosed with a GBM in 2009. She describes her experience below and her involvement with Brain Tumor Action Week in 2010.
Please tell us a little about your life at the time your loved one was diagnosed.
I live in Maine and I work with children in foster care. I know my work can be challenging and sometimes draining. I was tested to the extreme when my father, John, was diagnosed April 13, 2009 with a GBM. He lived for 86 days. I left work using Family Medical Leave to be with my father. My family was overwhelmed with the swiftness of his decline and the changes that brought to his treatment options. Understanding that we needed hospice was not a simple process. My father was not able to return home and accepting hospice meant the cost of his care was not covered by his medical insurance. As each day passed and new challenges emerged, I continued to be stuck back at the moment when I heard “your father has a brain tumor”. The enormity of what we faced each day prevented me from being able to process those words. My father and I watched all the Red Sox games played during that time, even the re-plays! Sitting quietly outside together and watching spring unfold was priceless. I learned more from my dad in those 86 days about life, love, and death than he had taught me in 42 years! I miss him dearly.
How has life changed since then?
I continue to comprehend how my life has changed even 2 years later! I returned to work and the routine of my life with a very different perspective. I was in a daze for many, many months after my father died. I moved through each day relying on the routine of going to and from work. The advocacy and awareness work I have been involved in has been instrumental in my healing. I have met wonderful people who have been affected by a brain tumor diagnosis. The biggest and most obvious change is that I no longer have my father’s physical presence in my life. His spiritual presence supports me to know that the best parts of who I am are brighter because of what we went through together. I have always been kind; now I am kinder. I have always been generous with my support of others; now I am more generous. I am enthusiastic about life; now I am more enthusiastic about even tiny bits of hope and love.
How did you get involved in brain tumor advocacy efforts?
Once I heard the words “your father has a brain tumor” I became an advocate. I am a member of the brain tumor support group in my community. Through that group I hear from many people who need support following a brain tumor diagnosis. I am available to others by phone or email to lend an ear and shoulder for support. NBTS has been my main connection to advocacy outside my community.
What was your experience like at Capitol Hill during Brain Tumor Action Week last year?
This time of year brings back memories of the 86 days my father lived after his brain tumor diagnosis. I appreciated the opportunity to channel my sadness last year into real action! I met with Senator Collins and staff from Senator Snow and Representative Pingree’s offices. I carried a photo of my dad that really shows great love and happiness. The support of the NBTS staff was instrumental that day as I asked Senator Collins to sponsor a resolution to designate the month of May as Brain Tumor Awareness Month. She agreed! The power of one voice can make change!
What are some of the big ticket items this year at Capitol Hill?
My hope is that our country’s current budget crisis will not stop our progress with the funding for the National Institutes of Health and the National Cancer Institute. We need to continue to advocate for increases in funding towards research and treatment advances to eradicate brain tumors!
What do you hope to see change?
What I hope to change will take more advocacy and awareness efforts! I want the words “you (or your loved one) has a brain tumor” never to be spoken again. I know this is an enormous and seemingly impossible task, but it is what I hope to see change. I was taught as a young girl that nothing is impossible.
Patience and persistence have a magical effect before which difficulties disappear and obstacles vanish.
- John Quincy Adams
What's your advice for others interested in getting involved in brain tumor awareness efforts?
Involvement in brain tumor advocacy and awareness efforts can be large and small. When my father was diagnosed I was in a desperate search to even talk to someone who knew about brain tumors. The isolation that my father’s diagnosis brought to my family was very hard. My advice to others is to identify what you CAN do -- not what you can’t do. I have found NBTS helpful in identifying many ways people can be involved from being a member of the support network to organizing fundraisers and events and everything in between! Just do it!
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