The Voices in My Head Were Telling Me to Live in Fear
By: Dan Burns
Tags: Caregiving, Mindfulness, Trauma, Parenting, Gratitude

When the voice talked to me, I would picture myself closing and locking the door to this road in my mind. Worrying about what we can’t control in the future just steals joy from the present, without making the future better. I stayed up to speed on the research around glioma treatments and created a binder where I’d file interesting pieces away. But there was no viable preventative approach and no active tumor with which to contend. While our trauma was surely ahead of us, life was there to be lived. And that’s what we did.

Worrying about what we can’t control in the future just steals joy from the present, without making the future better.

Six years passed, and we began thinking maybe Hillary would be the miracle. But then, without warning last year, the day came. Hillary had been doing fine, a little lethargic maybe, which we ascribed to the summer cold she seemed to have. She had an MRI and we sat with our doctor, having our usual pleasant chat before she would say, “OK, let’s take a look at the images.” Suddenly we were having the conversation I hadn’t let myself imagine. Recurrence. Aggressive. Likely glioblastoma. Must act now. Surgery. Risk. Critical decisions.



Within 10 days, Hillary had surgery. The doctor removed the tumor, but Hillary wasn’t responding as we hoped. She developed aphasia, a disorder that affects speech and language. As days went by, her situation worsened. She couldn’t read. Words were disjointed. She wasn’t paralyzed but couldn’t walk. She was a shell of herself — and I was just trying to figure out how to keep our family’s wheels on.

Now here we are, one year later. We’ve been through a lot. Two more surgeries. Continued therapy but severe limitations. And, of course, the world turning on its head with COVID-19. There have been tearful moments of frustration, times where hope has been in short supply and any light at the end of the tunnel invisible.

The amazing Hillary is still here, and her tumor is, for now, at bay. But with glioblastoma, even if you step out of the woods they lurk right behind you. I’ve left my CEO role, and my new top priorities are being Hillary’s caregiver and the lead day-to-day parent. At times, I’m still shellshocked by it all.



But here’s the kicker: Our family is genuinely, and gratefully, happy. Not all the time, of course. But we have found so much joy over this past year. Thinking and worrying about the future — beyond what we can control — is a black hole, so we try to avoid it.



Our dinner table conversations revolve around the present day and what we’re excited about for tomorrow. We talk about experiences or topics from the minutiae of our lives to the complexity of the world. As parents, Hillary and I avoid talking about what could happen, or venting about all that is wrong or unfair.

All around us there are dark clouds — behind us, in front of us, to each side of us — but I think our greatest accomplishment is that in our daily present space, the skies often feel clear.

We also find it’s unhelpful to look back to how things used to be. Sure, we don’t go out to dinner these days. We’re not taking big trips. The kids haven’t been to in-person school since March. But we’re spending more time together. We have new traditions that Hillary can take part in such as family game nights and cooking together. There is much to be grateful for, if we look for it. All around us there are dark clouds — behind us, in front of us, to each side of us — but I think our greatest accomplishment is that in our daily present space, the skies often feel clear.