I received my glioblastoma diagnosis two years ago, at the age of 29. The MRI results, the brain surgery, the doctor visits, the second opinions, the support groups, the decisions I was being asked to make…at first, it all seemed so completely unreal. But slowly and surely, it began to sink in: The prognosis, the treatment, the endlessness of this disease as well as the finiteness. The prospect that at some point, sooner rather than later, I will be struggling to speak, to eat, to breathe, and to move.
For a short moment, I was at peace with it all. I was only 29, but I had already seen so much of this world. I had traveled to many countries, made many great friends, fallen in love and out of love and in love again. I had worked many hours in a fulfilling job that excited me. I had realized my lifelong dream of moving from my rural hometown in Germany to New York City! I had learned, I had laughed, I had cried. Overall, I had already lived a very happy, privileged life.
Sure, I still had lots of plans and goals: I wanted to get promotions at work, wanted to hike the PCT from Mexico to Canada, to move to the West Coast, to buy a house, maybe even start a little family. But all of these goals seemed extremely irrelevant and impossible now that glioblastoma was trying to kill me. For a moment, it seemed like “stay alive for as long as possible” was the only plausible goal for the rest of my life…
But I didn’t want to just be alive — I wanted to live it as much as I possibly still could. So I started with small goals: “Get through radiation,” “finish your chemotherapy,” “hike 3 miles,” “run 15 minutes,” “celebrate your 30th birthday.” With the support of all the wonderful people in my life, I managed to accomplish every one of these small goals. And I moved on to much bigger ones.
So, over the last two years with glioblastoma, I married my wonderful husband, moved to Los Angeles, adopted a dog, backpacked more than 50 miles, improved my rock-climbing, spent countless hours with friends and family, returned to work on a reduced schedule, got a certificate in Sustainability, joined a board of advisors, and started writing a book.
Why am I sharing this story? Because if you’re reading this (no matter whether you have glioblastoma or not), I hope you’re living your life to the fullest, whatever that may mean to you. If you’re as privileged as I am, I hope you’re trying to use every single second in a way that is meaningful to you and the people around you. And if you do have GBM, I wish that this gives you hope and the courage to keep chasing your goals.