We are five years deep following Pat’s massive brain bleed, and people still ask what our lives are like. At the least, they inquire, “How is your husband doing?” My go-to response is to blink awkwardly, because a million images scroll through my head. Despite identifying as a person of words, I can’t find one. I usually settle on “the same,” because it is both accurate and vague. When I’m honest, people shift and look away, clearly uncomfortable, so I take the emotional hit and choose something they can bear while still maintaining some truth. Because the truth makes for awkward party or supermarket chatter. It’s so much simpler to reply with, “We’re fine.”
People ask because they are well-intentioned and kind, or at the very least, polite. Also because they are confused—they may encounter him sitting in his chair, chat for a few minutes, and see no difference from anyone else. We may watch a soccer game together, and while his gait is off, he may read as fine. More often, we encounter him asleep in his chair while life goes on around him. Or requiring significant help walking through the grass after the game. Or making nerve-wracking choices as people wonder, “Is that guy going to fall? Should I do something?”
It may be surprising to learn that we as family members are equally confused. The experience is akin to living with a familiar stranger. The opportunity to become acquainted with the new normal never presents itself, because changes cycle through by the day or even hour.
Brain injury is unique to each person. The type of injury. The location of the injury. The age of the person when they sustained the injury. Even (my personal favorite) whether they are right or left-handed. If I’ve learned anything through this experience it’s that brains are complex, elastic, sometimes fickle, and in control of pretty much everything. Pat's hemorrhage took place in his basal ganglia. It was described to me as, "Not much originates there, but it's kind of the corridor that everything passes through. So everything could potentially be affected. Or not." Non-committal words that offered little at the time but in retrospect were prophetic.
I have no experience in living with a brain injury. I do have quite a bit of experience in living alongside a person who has experienced one. In an attempt to offer insight, I’ve jotted down some points.
At our house, the experience includes...
...Conversations about civil war battles, but modified: names missing, longer pauses, and hours to days of sleep afterward in recovery.
...A familiarity with current events paired with the inability to make a sandwich.
...A sense of direction far superior to mine (helpful in navigating to doctor’s appointments) paired with the inability to make the appointment, fill out the paperwork, or remember the appointment.
...Carefully coordinating walks to the refrigerator or sink. Crossing in front of him at the wrong time can cause him to be flustered, or confused, or potentially fall. Movements need to be planned; we are self-aware at all times. Except when we forget to be. Which triggers neuro fatigue (below).
...Neuro fatigue. Think of your computer powering down. It’s going along, then windows close, and then...nothing. This happens pretty much daily too. Here’s how it looks: We are living life, and then the wrong stimulation hits: a loud sound, a breeze, the sun in his eyes. His eyes are immediately red and his head slumps. He sways and will pass out if a chair isn’t found. His right side doesn’t work, because the brain controls everything (see above). He can only speak in mumbled whispers. For a few minutes. Or a few hours. Or a couple days.
...Never knowing which version will be with us in any given moment, hour, day. The almost-before-stroke version? The sleeping version? The brain-is-powered-down-so can’t walk version?
...Patience and more patience. Everything takes time. So much time. Leaving the house. Walking. Finding the words.
...A collection of pictures in my phone that no one sees but I am compelled to take. Pictures of him slumped over again and again. Our unchronicled reality.
...Generally one experience a day that leaves me wondering, “Is this ok? Should we be going to the hospital (again)?”
...A fully intact dark sense of humor. Which gets us through quite a bit : )
...Art! Paintings and classes and paint and mess, when before there was none. Many doors may have closed, but he’s found a window.
If you’re confused and can’t quite get a handle on this description, I’m right there with you. If I stare blankly and blink at you when you ask how things are, again, my apologies. What I’m thinking is the above, but that’s not what people are asking, so it’s not the response I offer.
Putting words to this experience has me questioning my purpose. On that I’m clear: we are not the only people living in this type of situation, and others may find it relatable. Anything I can do to help myself or others feel less isolated is worth a go in my mind. At the same time, I am aware that reading this, you may feel uncomfortable. I’ve really grappled with this and have decided that discomfort is ok. Trust me, it’s making me way more uncomfortable than it is you. So if you can sit with my words and gain insight and apply it to another situation, this has been a worthwhile endeavor.
On my end, I promise the next time we run into one another, I will blink, smile, and reply with my usual, “We’re fine.”
Recently, life has turned on its head for our family. This blog gives me a place to jot down my thoughts..