One year ago today, Matt, G, H, and I—along with a large group of family and family friends—participated in the American Brain Tumor Association’s BT5K. For the second year in a row, we woke up to a cold, sunny morning, drove into Manhattan, and walked along the Hudson River to help raise funds for research and awareness for brain tumors, including Glioblastoma.
I remember the day. I remember we were running late because Matt kept forgetting he needed to get dressed, because he didn’t want to be rushed out of bed, because he needed to go back inside for one more thing. I remember that he walked slowly and there was something in his posture that didn’t seem right. I remember family and friends coming up to me and commenting on how good Matt seemed and how I was internally screaming and wishing I saw what they saw. Because all I saw was a reason to call the doctor in the morning.
Afterward, we—the big group of family—went to brunch. Matt sat at the end of the table, mostly quiet. At one point, he put his head down on the table. Once we got home, he spent the majority of the afternoon and evening napping or resting on the couch, disengaged from G and H.
Two years ago, full of hope and a certainty that we had some secret weapon against a tumor with abysmal survival rates—Matt’s strength of character, our will power, all our supplements—we attended the BT5K. We walked and smiled and took photos by our team sign.
Yesterday, G, H, and I participated in the ABTA’s BT5K for the first time without Matt. For the third year in a row, we woke up to a cold, sunny morning and drove into Manhattan to walk along the Hudson River beside family and family friends. This year, I fought back tears for most of the drive into the city. This year, I was almost resentful about going. And I tried to examine why that was. My initial reaction was that I was annoyed by the t-shirts and water bottles and giveaways—the money for those things should go to research and desperately needed caregiver support. But the more I sat with that anger and resentment, the more I realized it wasn’t just the t-shirts and water bottles. It was this. We (Matt and I) gave not only our time, money, and support to brain cancer research, but also my husband, my children’s father, my hope, my dreams, my future, and my every moment of uncomplicated happiness. Matt participated in two clinical trials—and presumably his information is adding to the wealth of knowledge paving the way to a cure—and they (that ambiguous they) squandered all that we gave. He wasn’t cured. Both clinical trials failed him miserably. And, rationally or not (I realize not), for that reason, I’m as angry at the ABTA as I am at the doctors who didn’t save him. We gave everything to brain cancer research, and we have nothing but a t-shirt to show for it. And the thought of giving more, of walking in Matt’s memory rather than with Matt, reopened wounds I thought had started to heal. It was too hard. I was too angry. I knew that was selfish—so many people still need a cure—but it was true. (I promised this story honesty, not perfection.)
But then we arrived at the walk. And a few good friends surprised us by showing up. And we walked and chatted in the cold. And I thought of Matt walking that first year. I thought of how enthusiastic he was on the drive home—making me post pictures on Facebook and double checking that I’d tagged everyone in the thank you photo. How upbeat he felt after seeing all those people walking—family, friends, strangers—all because they believed a cure was within reach.
And I thought, maybe this year I can’t give any more—the anger is so visceral, it’s nearly blinding. But I can be there and that in itself can maybe be enough for now. To give hope to someone else who is walking for the first time, who needs to feel like there’s a world of people out there fighting for a cure beside him. To a caregiver, who maybe feels like she’s drowning under the weight of a new normal and a new role and needs to know she’s not the only one.
I believe it’s okay to be angry, to let that feeling be as true and present as all the others. One day, I hope I won’t be and I’ll be able to give more of myself. Because I also still do believe in the ABTA and Columbia and Duke and all those doctors and nurses and researchers. (Like I said: every moment in brain cancer is met with a contradictory moment.) One day, there will be a cure.
Of that, I am sure.
And for that, I will continue to show up, and give as much of myself as I can.