Today is “Rare Disease Day” in America. Brain tumors are technically categorized as a rare disease, though at National Brain Tumor Society we like to say, “it’s the rare disease that everyone’s heard of.” In other words, brain tumors are’t rare enough – they are still all-too-common for our liking.
Yet, despite the fact that you’d be hard-pressed to find someone who has never heard of brain tumors or doesn’t know someone impacted by one, the intimate knowledge of what those diagnosed with this disease – and their caregivers and loved ones – go through is often lacking among the general public. Enter, “Going Out Like Fireworks,” one veteran journalist’s deeply personal and immensely powerful look at living with a brain tumor from a patient’s perspective, which, since its initial publishing in the Dallas Morning News late last week, has quickly spread across additional media outlets and social media. (Coincidently, this comes shortly after the captivating photo documentary, “this is…” which we shared last week.)
The narrative’s author, Jeffrey Weiss, a long-time reporter for the Dallas Morning News (DallasNews.com), was diagnosed with a glioblastoma (GBM) in December of 2016 and has chronicled what his life has been like since diagnosis for he and his family and friends, including important information he has learned along the way and advice for current and future GBM patients and caregivers.
It is not often that we see this type of comprehensive first-person account in mainstream media, and we thank Jeffrey for using his platform and gift for writing to so candidly and thoughtfully articulate his journey. We now share the story with you here, as we feel it is an invaluable resource for all those looking to understand glioblastoma, from current patients/caregivers, to future patients/caregivers, to many in the general public…and we want to ensure as many as possible get the chance to check it out.
Going out like fireworks: A reporter investigates his own illness — brain cancer | Life | Dallas News
What I’ve learned about fighting glioblastoma — and the specific strategies I used to learn it — could be useful to people dealing with lots of other serious illnesses.
We hope you find Jeffrey’s piece as insightful and inspiring as we did. Let us know in the comments what you think and maybe some of your own strategies!