Brain Injury Journal

Breaking the Brain: Part 2

I finally had the review of my “neuropsychological evaluation,” the test that identifies what parts of my brain were most affected from the encephalitis. When I left the neuropsychologist’s office, I cried. And cried some more. It finally hit home that I have a brain injury. It happened. Why I have been able to write about my experiences but not truly internalize that this brain injury is real, I am not sure.

The report is very clinical with complicated phrasing like “impacted white matter connectivity” and yet, it’s achingly personal because it shines a light on how I think and reason. Like the good student I have always been, I was excited to see high numbers in areas that I know are strengths of mine. And I have enough self-awareness to recognize that a brain injury isn’t going to affect how I do on visual puzzles. I have seventh-grade geometry to remind me of that. What tore me up though was the summary of the damaged areas followed by the phrase, “these results are severely discrepant with her intellectual profile.”

It stuns me. There’s broken bits inside my brain. I remind myself that this is a point-in-time result, not an indication of my future. I am still healing.

1082-origPeople have asked me how I keep going. Sometimes they even say, “I couldn’t do it if I were in your shoes.” I don’t find that motivating. I only know that I have to take a step forward and another step. There are hard days, difficult moments and lonely experiences. But without fail, I have always found something sunshiny, a spot of joy or laughter to fuel me for another day.

Cartoon courtesy of Dharma Comics

Sometimes I find the sunshine myself, sometimes it shows up in unexpected ways like silly GIFs that my app-obsessed aunt texts me.
Yesterday, the sunshine found me. I opened a card from my mom that I had saved for a rough day (coping strategy in play right there!) and it read, “If  it’s true that adversity builds character… your character’s been getting quite a workout lately!” She also included this bible verse, “Have I not commanded you? Be strong and courageous. Do not be scared; do not be discouraged for the Lord your God will be with you wherever you go.”

It’s true, I’ve felt surrounded by love every step of the way. I wouldn’t have known that I could survive something like this but I am doing it each day, one step at a time. Hopefully with love and grace…

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.

Brain Injury Journal

Breaking your brain. Round 1

I took part 1 of what’s called a “neuro-psychological” exam last week. It apparently helps doctors pinpoint what functions of the brain are still working and what areas are damaged. This should help to identify the kinds of rehab I’ll need.

My initial thought was that this might actually be fun – it’s word puzzles and math problems and problem solving. Oooohhh! I miss the cue that this is not supposed to be a fun test. Well, not a hint exactly, but something more like a direct statement that most people cry during the exam made even more complete with a hand gesture to the tissue box. I just remind myself that I’ve made a good living from my God-given intellect and I like stretching it. Ignore my hubris because you know where this is going.

We start the exam and I notice that I can’t really form the pictures I’m supposed to with these little blocks because my left hand is shaking too much. Score 1 for the test. We bounce from word problems and recall exercises to math problems and others. I ask to stop between every few tests so I can snack and get my blood sugar back up. Does that count against me? Not sure.

I’m slumped back and sliding out of my chair with my hands alternately massaging my temples and covering my eyes (when did the room get so bright?) mumbling answers when the neuro-psychologist breaks through the fog settling in my head to say we’re one hour in. I sit up and soldier on stopping myself from asking to put my sunglasses on because I don’t want to look weird. And that’s when my brain goes AWOL on me. “You just need to turn one set of numbers into a fraction and then solve for the missing number,” I coach myself but it’s not enough – I’ve hit a silent, blank space in my brain that I’ve never encountered before. Rattled, I excuse myself to go to the bathroom.

We start a new exercise. I’m read a story and then asked to repeat it back word for word. And here’s where the test breaks me. I try to recall something, anything. The best I can do is a phrase that there was a woman involved but none of the texture or key points. Words are what I love, what I’ve always been good at. Why can’t I remember them? And that’s when I cry – the intellectual equivalent of ringing the bell at SEALS school – you pushed me and I broke. Unlike the Navy, this proctor doesn’t let me quit even though I’m sobbing, sliding out of my chair again, clutching my stomach because I think I’m going to throw up, and covering my eyes with my other hand. He tells me that this is normal for a person with a brain injury. (And I am reminded again that this is my new normal.)

Later, he tells me the results of the test are important but my physical and emotional behaviors during it also matter. Round one: the test.

Where’s the good news in this? Well, I feel blessed to have this particular doctor come into my life. It can be a game of roulette with who’s in network and out of network with insurance providers but through fortunate circumstances I got a guy who has already shined a bright light on what’s going on in my head and he gives me hope.