Brain Injury Journal

Walking the walk

I’m talking with my neuropsychologist about next steps after what has been extensive (and exhausting) “neuropsych” testing to pinpoint the damaged areas of my brain. I won’t get results for another week but he says we should make a homework plan now to start working on my “aphasia.” Here’s how that conversation went down.

“My what?”

“Your aphasia, the challenges you…”

Me interrupting, “I know that word. It’s for people with serious brain injuries.”

“Like I said, your aphasia…”

What is the take-away here? I am in denial.

For those of you wondering what aphasia is, find more here. It’s most commonly associated with people who’ve had a stroke and have to learn to talk again. It’s very rarely associated with encephalitis so I’m keeping my status as a medical anomaly.

Initially, my aphasia was severe. While I lost total language at one point (future post on that experience), as words came back to me, they had an Alice in Wonderland, nonsense quality to them. I know this because my mom took notes. I wonder now if she was actually creating a dictionary if I didn’t improve. Take a guess at what I meant by “fridge errand” or “chair prain.” According to her notes, “fridge errand” means “Jenny wants dinner.”

I’ve improved to the point where I occasionally stutter or switch sounds between adjacent words “devoice doin” instead of “join your device” (trying to explain tethering a tablet and cell phone). A less obvious side effect is that I can’t keep up when people talk too fast or if there’s a competing noise or conversation. I could play along but I am getting more comfortable asking people to slow down or by controlling my surroundings so it’s not the hipster talking too loud on a cell phone that interferes with my hearing – just my broken neural pathways.

While all of this is hard to acknowledge – I am in denial after all – I realize there’s a different hurt, one I didn’t know I was holding. And it’s that my mom has walked this path. Shortly after I graduated from college, she had a stroke. Still unbelievable to me, but there’s a giant piece of dead tissue in her brain where it was oxygen starved. My mom had to re-learn to control her tongue to pronounce letters and words. She had to re-learn how to use her hands. She worked so hard. I tear up just thinking of the effort.

As I get better in some areas and struggle in others, I’ve thought of my mom’s experience and wonder what she felt during her recovery. Did I make her feel as loved and cared for as I have felt? I don’t really need to wonder. I know the answer. I was busy fixing not feeling.

I never stopped hustling her – from forcing her into the car to the emergency room, to pushing my way past the swinging ER doors to grab a doctor – there wasn’t time for triage – to hustling her to heal. I bring this up to my mom – and preface that I’m not ready to be reminded of details – but ask if I might have been kinder or more understanding to her. Not erasing my ache (that is my work) but not making it any worse, she simply says, “Now that you know, you can pay this forward.”

I think of the kind and understanding neighbors, friends and loved ones who have surrounded me. And while they can’t be in my shoes now, they are walking this walk with me – sometimes holding my hand, sometimes leading the way and sometimes cheering me on. No one expects me to “hurry up and get better” – they just keep being with me.

I can’t undo that I didn’t do the same for my mom. I was busy trying to help her get better, to fix her. Instead of offering my hand to steady her, I was busy looking for a trail map and buying hiking boots for the rocky path ahead. When that time comes to pay it forward, I pray that I may be granted the graciousness and gentleness I’ve been shown and be ready to walk with others when they need me.

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9 thoughts on “Walking the walk

  1. Jennifer, Great post! Your appreciation for your mother is awesome. It makes me think of a man who did so much for me in this world. He had a stroke and I visited him once. Why did I not visit him more? I didn’t even show him a trail map. It is true that I had my own problems at the time, and unknowingly was dealing with the effects of my own brain injuries. My therapists calls them “treasures in the trauma” but 10 years after my last brain injury and I’m suffering from receptive aphasia still, I’m more aware of other people’s suffering and hopefully “paying it forward” when I can. With all my might, I’m not thinking of the people who abandoned me in my worst times, but I’m thinking of the people that I failed to be there for. Regardless of the reasons.
    “cuando hay que hablar de dos, mejor empezar con uno mismo” lyric from shakira. I am putting aside my trace of bitterness at the people who failed me and beginning with who I failed. And despite my deficits, I’m trying to pay it forward! Peace! Luka.

    Liked by 1 person

  2. mom says:

    This journey you are on is yours alone. However, the more you are able to reach out to others the more grace will come to you. From my experience when I am transparent and honest with important people in my life regarding my physical and emotional wellbeing the more honest those relationships have become. Butterfly kisses my dear daughter. Love mom

    Like

  3. Lindsay Hormandl says:

    Jenny, I just joined this and have been reading your blogs. I love you so much, Jenny. You are such a beautiful person inside & out and have a lot of people that love you so very much. Love, Linz

    Like

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