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.

Standard
Brain Injury Journal

Learning grace from my friends

So many of you have emailed, texted and called after reading my last post. THANK YOU. Your outreach lifts my day. On top of all the kind words, I have gotten questions. Here’s answers…

1) What happened?

The simplest explanation is that I had a virus, I was treated for it and then my body failed me. The medical diagnosis is autoimmune encephalitis and ataxia. The longer and fancier words include the preceding virus. In case you don’t want to use that medical tool called the internet, ataxia is when you lose muscle control and coordination. And encephalitis is a swelling or inflammation of the brain. Trust me, bad things happen when your brain swells.

The neurologist explains all of this in simple language. And why wouldn’t he? Maybe it’s because I have a brain injury that affects my cognition though we all know the real reason is that I’m not educated in the workings of the body to understand anything more complicated than “my immune reaction was confused.” But I want to know why? And not the metaphysical “why” (I’ll save that for another day) but why did my body do that. Could it happen again? More to come there.

2) Did you know something was wrong?

Yes and no. I had been on the mend from being sick but something wasn’t right. I was worried enough to email my doctor. When I saw a PA a few days later and couldn’t put words to what that “not right” feeling was, he listened and sent me home saying I was out of sorts from my viral infection but I should be fine. By then I wasn’t able to recognize my symptoms as worrisome. Why can’t I put a piece of gum in my mouth? 3 pieces of Trident sit on my desk and one in the trash but what’s going through my head is “there is something really wrong with that gum.”  I sit there curious – but not alarmed – about this poorly behaving gum. Then the phone call from my doctor’s office and more calls. 14-mile drive to the hospital? No can remember. And so this journey began.

3) Are you okay? 

No, I’m not. Really. In a short period of time, I lost everything I know about myself. And even though I’m recovering, there’s a litany of ongoing symptoms that make daily life hard. However, I am brought to tears (literally, I cry when I see my friends now) by friends and family and church members who’ve been so gentle and caring and giving to me right now.

4) Don’t you feel lucky? That could have been really serious.

You mean really serious like I could have died? Yeah, I wish I could say that I feel like I dodged a bullet but I don’t. Something is stuck in me and I don’t feel that profound sense of gratitude for my life that I know I should. It’s too soon. Maybe it’s cognitive dissonance that this is happening (translation: I need to fully accept that this sh**’s real) or maybe it’s too traumatic but given time I will have a different and more respectful perspective.

5) How can I help?

This is without a doubt the hardest question because asking for help isn’t how I was raised. I could blame my parents for making me too independent but that independence comes with courage and hope and the toughness to keep going when things get hard. I’ll never trade those in. While I’m being given the opportunity of a lifetime to get better at asking for help, remember, I’m still a novice! Open-ended offers are wonderful but harder for me to respond to. Throw something out there, anything and let’s go from there. It’s a lot easier to say “I don’t need a ride tomorrow but I’d appreciate it if you picked up a few groceries” or “I’ve been home for days and the only people I’ve seen are medical professionals so yes, a small visit would be amazing… oh and you’re bringing food, thank you, I’d love to catch up over a meal.” A neighbor showed me the way with this simple note, “I’m awfully sorry. Are you seeing visitors now? Can we come and visit and bring groceries?” Nailed it. Now I know what to do for others.

And to directly answer the question, I need practical help with groceries, occasional meals, driving and errands. And just as importantly, I need your kind words and prayers,  your company and your positive support.

And the last question is from me. Where does grace fit in all of this?

I know in my heart of hearts that this learning to ask for help, learning to accept help and learning to allow myself to be loved and cared for by others is something I am supposed to learn. It’s teaching me to accept grace whether I feel like I deserve it or not. Dropping off strangely specific grocery requests, bringing a meal or just hanging out and helping with some housekeeping might seem a modest effort, but I assure you that it is not small in my book. You are giving me something so much bigger. You are giving me grace.

Standard
Brain Injury Journal

A little story about why grace

I almost died. When I hear those words, they almost always seem like an exaggeration or an expression of a pulsing fear so deep that we don’t know what other words to use. There’s a scene in the movie Clueless where a group of teenagers crowd around a not yet, but soon to be popular girl to hear her account of how she nearly but not really, nearly died. Realizing that her peers think she’s cool because she toed that line between here and that somewhere else and that she likes their attention and being the center of this excitement, she gives them the story they want. A wild and breathless account of how she was this close, this close to falling off a railing in a mall but saved by a handsome boy she’ll crush on.

Being near death and saved is not my story. Or, at least not the story I remember. The story I remember is an IV in my arm. My mom being with me, being so gentle and patient. Somewhere in there a phone call telling me to go to the hospital NOW. Another message telling me that I needed to get to the hospital.  Maybe 4, maybe 5 calls before something kicked in and I realized I needed to move, this was serious. Apparently, losing your judgment and reason is a sign of something serious. A moment looking at a magazine and suddenly wondering why I couldn’t make out the words even if I squinted really hard. Waking up, my head still on the pillow when I realize my senses have turned all The Incredibles on me. I hear every individual component of an air purifier running, I hear an airplane engine it’s no longer  a “noise” but a thousand little sounds that I can tease apart. Yeah, I have a new superpower! Not so super when I start wearing ear plugs, a hat and sunglasses inside my house to avoid a crippling, falling on the floor crying reaction to any motion or noise or light. Losing all my words. Realizing that even if my mouth could say what I wanted it to that I didn’t know words any more. Tapping my head and assuring my mom, “Don’t worry, I’ve got it all up here.” Righhhht. A memory of dear neighbors swooping in and offering help, bringing groceries and just being present with me. And more friends. And feeling more love. Feeling unworthy of the attention but knowing without this help, I will hurt myself. That I am no longer capable of taking care of me.

So why do I feel like that there’s something so untrue when I write the words, I almost died? I suppose we all have “that story” in our lives – usually from a really close call while we’re driving or a step taken too quickly into the street not seeing a vehicle that nearly careens into us. That split second leaves our heart pounding, our body shaken by the reality that we missed death by a smidgen. “It was so close,” we tell our family, “an inch closer and I don’t know what would have happened.” I think we tell those stories to help process the fear and clear that stress hormone that’s pulsing through us. And we lean in to hear those stories of close calls because we know that life is fragile and it’s a thrill when a close call is just that.

I think the clinical truth is I could have died. A study I read said that somewhere between 20-50% of people who have this form of brain injury do die. Those are scary numbers. But, my brain wasn’t working right. I don’t have the same memories and fears that we think of when we say the words, “I almost died.” What I do know is that it feels untrue to say the words because I did not have an adrenaline-induced, hands trembling, heart beating so hard you feel it in your throat moment. No, my story is that I have fragments and feelings and this wonderment at where the weeks went? And of course, the memories I’m creating from what people tell me they saw and remember. Sometimes, it’s hard to believe what they tell me but I don’t have anything else to go on.

What I know now is that my brain isn’t quite right still. My body not quite right. No timeline, just guesses and assurances that it will be okay in time. But, you’re alive, right? Yes, but not in the way I remember being. And that makes me sob  and sob and makes me so gosh darn frustrated.

So why grace? Because I need it in spades. I need to give it to myself – and not just while I’m healing and doing off-the-charts absentminded things, having to sleep for hours on end and trying so hard to just make it through each day – but for grace to become seeped in me to counter my demanding, judging and often unforgiving self. Because as a Lutheran, I’ve been taught that grace is what God gives us as complete and unconditional acceptance and love. Because that’s what I need right now. Grace always.

Standard