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.”
9/23/2019 05:59:08 am
Hey - Next time I see you - feel free to really share, have a good cry or just say - hey can you hang with Patrick while I go do "insert whatever feeds you here". Honestly, I can hang with Patrick if ever you need a break. My RN schedule means I work 12 days a month. Philly is a quick flight/drive. I'd love to have you on the Cape though. You say when and where. You are a gift to everyone who knows you. You challenge me to be my best self everyday. I love the drumming!!!! Your creativity is so not a gift I have. Please know you are in my prayers daily. I'm with you in dark humor - it's often my go to as well ♡
9/29/2019 08:44:08 am
Helping or not, it would be great to have you visit more! I wish you were nearer, but it feels good having you close where it counts. Xox
9/23/2019 06:36:32 am
9/29/2019 08:45:03 am
Kind of rhythmic, at least! ; ). Thank you, my friend. Happy to have you in my life!
9/23/2019 12:21:05 pm
Jackie, thank you for sharing. I understand and can emphasize as we have walked a similar path. I as a child who didn't understand what had happened to my mother, and then an adult who had to accept that she would never get better, and tried to help her and bring her what happiness I can. As hard as it has been and as frustrated, angry and bewildered as I have gotten (and still get -- Lord, she has recently started wearing a bath towel draped on her head). You have the added weight of being a caretaker and spouse. I cannot imagine how challenging and downright hard that role is. You do it with strength, dignity and grace (though I know there are moments and days you probably dont FEEL especially strong). Pat and your children are blessed to have you. Thanks again for sharing - I'm hoping it is somewhat therapeutic for you to write and share. I wish I lived closer so I could see you more!
9/29/2019 08:48:52 am
30+ years later, I still want to apologize to you on a regular basis. I had *no* idea of what you were living, and like people who interact with me, kind of felt like it was in your past rather than your present. I think about your mom all the time and feel much closer to her (without ever meeting her) than I did when we were roommates. Yes, it it somewhat therapeutic! Lmk when you’re up north : )
9/29/2019 09:29:08 am
Thank you, Jackie. That means a lot You helped me in so many ways at the time simply by being my friend and companion. Also, I preferred during that time period (for better or for worse) not to actively think about it or talk much about it and just drive on through it. Thinking of you and hope to see you soon... please come stay with us if you are ever in the Raleigh area.
9/23/2019 01:46:08 pm
Caregivers need to do whatever it takes to maintain—thanks for sharing!
9/29/2019 08:49:46 am
Absolutely, Norma. Thank you for taking the time to read and comment!
9/23/2019 06:49:52 pm
Thanks for your continued honesty and openness.
9/29/2019 08:50:47 am
Thank you, Amy. I know that you have a real understanding of challenge and resilience. Sending love back to you and yours. Xox
9/29/2019 07:45:04 am
Thank you for sharing this. I expect that writing this was like exhaling after you have held your breath for so long. The new normal doesn't really ever seem to come does it? There are moments though when life seems more tolerable and you don't feel so much like your waiting for a big shift. I'm so proud of you for working to make your life "better" for you and Jamie. Especially you. Maybe you could speak at the next BIAPA conference. I think you could help a lot of people.
9/29/2019 08:54:15 am
Waiting for the new normal has made itself known as futile. The new normal is...no normal? Sending love to you, friend. I’m impressed by the way you’re taking care of yourself with your choices. Thinking of doing the same!
10/8/2019 06:22:33 am
Thank you for sharing this. Such a well-written window into your life.
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