Targeted Search

A gentleman asked me, “Looking back at the beginning of your journey, what could have been done on the healthcare team's end to help you?” Taking a deep breath, I realized the question was an open door. I wasn’t sure I felt fully prepared to walk through it. I’ve pondered this question since then and want to share five qualities of healthcare providers that left an impression on me.  

Finding acceptance after a brain injury isn't easy. "For a long while, I bucked against our reality. I found myself caught between what I had once known and an uncertain future. The in-between caused marked turmoil. As much as I didn’t want to accept Taylor’s brain injury as part of our lives, it is. As much as I wish it didn’t affect Taylor and our family … it does." 

It was hard for me to track my own evolution. But growth was taking place.

Over the last few months, a group of people has weighed heavily on my heart. I’ve been thinking about them, and I’ve wanted to express my concern and compassion for them. They are the siblings of brain injury survivors. What happens when your brother or sister suffers with a brain trauma?

Hope—love—tenacity—go for it—get mad, let yourself be sad—but don’t let the madness or sadness swallow you. These were repeated themes, said in a thousand ways for a thousand reasons. These are the messages we need to hear again and again.

Caregiving is hard. The lack of support for adults with brain injury (in our area) is ridiculous. I find myself wanting to scream when people ask, "Don't they have services for that?”

It’s been six and a half years since I began this brain injury journey. Or, to compute, 2,372 days, 56,928 hours, 3,415,680 minutes. As I think back, I take pride in each of those days (the bad ones included), remembering too vividly a time in which I was convinced we couldn’t make it at all.

The emotional equivalent of being caught in the undertow came earlier this week. I was scrolling through old photos, reconnecting to moments captured in time. I found my mind trapped in the tumultuous waters of ambiguous grief, fighting my way to the surface.

I didn’t even know who or what I was angry at. Fate? Bad luck? The person who hit my husband with her car?

It’s time for a broader, braver dialogue around gender and caregiving. It’s time to start talking about the transformation in identity that occurs when one spouse adopts the role of the other. It’s time to recognize that caregiving is a role that requires the revision of gender norms and the acceptance of power transfers.

In learning how to manage the small, we become better equipped to manage the large. A well-rounded caregiver doesn’t just come into being because a trauma occurred. Becoming is a process, a transformation.