February 5, 2018: Restless

In the days after February 3rd, there was grief and despair and heartache, all the turmoil that was to be expected after a death, but, there was also something else, which was unexpected and surprising and, at times, more overwhelming than the grief and despair and heartache combined. There was a restlessness that struck in the days after February 3rd. Half of my brain was so used to being hyper-focused on Matt, and it no longer needed to be; and I didn’t know what to do with myself, what to do with that reserve of mental space and energy that had for so long been devoted purely to Matt. For the first time in months, I didn’t have to rush to Matt–I didn’t even know where exactly he was and who was with him. I didn’t have a nurse to call for a status update; he didn’t need to be checked on. Matt didn’t need me anymore and I wasn’t sure exactly who I was anymore if I wasn’t defined by taking care of Matt. The–maybe final–cruelty of brain cancer: losing your person while losing yourself.

These were the rawest days, the blurriest days, when I walked around the house and couldn’t remember what I did before brain cancer violated our life. These were the days when it felt as if an invisible curtain had fallen between me and the rest of the world, and I was seeing and hearing everything but as if through a filter. These were the days when I was sure something was wrong with my brain because it kept rejecting the idea that Matt was gone.

I remember the overwhelming certainty that someone had made a mistake—and maybe that someone was me. Maybe I had made a mistake in that quiet room in that low light and Matt wasn’t really gone; and if he wasn’t really gone, then we shouldn’t talk about death and funerals because that was morbid, and Matt and I never talked about death—we only talked about cures and miracles.

One year ago today, with no Matt to rush to, my mom and I took G and H to Target for the sole purpose of letting them pick out a toy that might make them smile for a little while. I remember walking through the aisles, looking at the other customers pushing their carts and thinking they had no idea that my world—our world—had crashed and shattered beyond repair, that I was a walking shell of a person among them. And  I remember thinking how impossibly hard it was to walk around bearing the full weight of this story on my own—this story, which was full of triumphs and struggles, hopes and heartbreaks, this story which was so huge, and yet known by so few.

Some have said I’m brave for sharing our story. But I’m sure it’s the opposite. I think it’s easier to release the weight of this story day by day than walk around with the heaviness of it in my head. It’s easier for me to expose this story to the light, than to keep it in the dark. It was too hard to keep this story inside; the weight of it would have kept me anchored in those darkest days. I think, actually, it’s everyone who has followed along—so many since the beginning—that is brave, because this story, while full of hope, is tragic, and too many days hurt too much. And I think it’s brave to listen to someone else’s story with an open heart. I think it’s brave to give someone time and space to tell her heavy story. I think all of that is brave.

Two more stories remain in this project, two more days after today. Thank you so much for listening, for allowing me the space and time to tell this story; it made each day of an unbearable year more bearable.

2 thoughts on “February 5, 2018: Restless

  1. Elaine,
    I hope you received my email from last week. I have been following you for the last few months and I want to say thank you to you. I feel your pain and you have put into words exaxtly how I feel. I know from the bottom of my broken heart that you have helped many by sharing your journey. I know you helped me.
    I will miss my morning read from you.
    Sending much love and strength,
    Linda Limperis


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