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Some may question the morality of lying. As I moved deeper into my new role as a caregiver, I reached out to learn as much as I could about caring for someone with mom’s type of brain injury. My mistruths are categorized as Therapeutic Lying.
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.
This book packs a lot of wisdom. You’ll learn about aphasia; you’ll understand ambiguous loss; you’ll follow Abby down dark hallways and into sunlit rooms and learn what it means to own a life built on raw truth.
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 don’t often write about my teen kids. But in this case, I want to share something. I need to, because coming full circle means that I get to let go a little of this job of informing our kids what happened to their wonderful father.
Life inside the bubble of brain injury is a roller coaster. In our bubble, the daytime is generally good. Nighttime brings the opposite. Each evening, Taylor's post-injury thought process evolves into a profound sense of sadness, frustration, and defeat. It is hell to witness.
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.
After my son was diagnosed with a severe brain injury, despite the shock, I remember hearing Steven’s healthcare providers repeating the word caregiver, over and over, as if they were determined to make me, of all unqualified people, claim the title. I felt an urgency to scream that nowhere on my resume indicated that I was qualified to take care of a severely, brain injured son.
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.
In August, we were presented with both high and low points. Our son, Taylor, was able to attempt to return back to work two days a week. Within fifteen days of returning to work, Taylor lost his brain injury service waiver. We had to hope nothing happened. And then…it did.
Being a survivor takes dedication. From my vantage point, you have to be many things. The first, and perhaps most obvious is that survivorship requires strength. Strength is required no matter what stage of recovery or healing the survivor is in.
My case manager’s brain was pondering the logistics and the potential extent of Christine’s injuries. But my brain as a Mother was focused intently on keeping myself together so that I could be effective.
I wish I had found Alix Kates Shulman’s memoir "To Love What Is: A Marriage Transformed" in the first month of my husband’s severe TBI, and yet I may not have absorbed it the way I did reading it fifteen years post-injury.
Our minds are both a beautiful and cruel playground, brain injured or not. Be careful about what you let on that playground, and when your thoughts seem to lean severely in a negative direction, recognize that in painful times, we sometimes think and believe things that are untrue
My life as the caregiver and mother of a brain injury survivor is similar to being on a challenging hike. You gather the proper gear and feel adequately prepared. You begin the hike with an overcomer’s attitude, looking forward to moving through the miles...
Brain injury has changed you. It has broken you, rebuilt you, strengthened you, and humbled you. Sometimes it does all of this in the span of one day. I don’t know that I have the words to make this journey easier for you, but I can offer this...
When brain injury comes into a family, it is an unwelcome guest, sitting at the table every single night. In time, you have to learn to accept the guest, and what the presence of it means. You can’t just pretend it isn’t there, and you can’t act like you know the totality of all that is involved.
It happens slowly, like that metaphorical frog you’ve heard about. Possessiveness and controlling behavior in TBI caregivers is something that creeps up on you, and I suspect it is common — not because people are trying to be annoying, but because they care so much and want to see that their loved one is treated well in every respect.
A few weeks ago, I had the opportunity to share with a group of caregivers and survivors at a rehab. From the moment they entered the gym, I sensed their exceptional spirits. This was not surprising, as I have discovered the brain injury community to be comprised of the finest people you will ever encounter.
As the shock began to fade, it felt like a curtain lifted, and I was cast in a play with all the characters, one by one revealing how they were affected. Amidst their grief, they wondered if I would ever laugh again, have date nights or travel.
We’ve all see that face. The well-meaning face of pity: the downturned brows and lips, the misty eyes. After Hugh’s TBI, I seldom met a friend or acquaintance who did not flash this expression at me every time we met. My daughters felt it, too. The funny thing is, we did not want pity. We’d had our fill of it in the ICU.
“I’m sorry your life got ruined,” a well-meaning friend sympathized one day. Her words landed like bricks. Wait, I thought to myself, was she right? Was my life really ruined? Was I the last to know of my own obvious fate?