Brain Injury Journal

Truthiness

When I was in fifth grade, I competed in my city’s spelling bee. Two memories stand out from that day. First, my throat culture came back positive for strep just hours before the event. There was a conference among the adults to decide whether to send me home or let me participate. There I stood, an eager, probably too earnest, eleven-year old girl upset that getting sick could disrupt my plans. I’ve always suspected that my principal had a soft spot for me because the discussion was suddenly over and he told me to do my best, avoid other kids and then go home. I pushed through the fever and sore throat doing well enough to represent students in the 5th-8th grades to go on to the county spelling bee.

The second memory is looking over my scored written tests after the finals and seeing that I’d been docked a point for spelling a word that I thought was correct. I was so sure of being right that when I got home I ran to the dictionary. It’s practically too perfect to think about this now but the word was judgment. I spelled it with an “e” in the middle. While not common, judgement is an acceptable spelling. No matter that this mistake was meaningless to the outcome of the spelling bee – the judge’s  mistake stung.

Now decades later, the grown woman is more like the little girl than I ever realized. I’ve tried to convince myself that if I think I’m stronger, I will be. That if I push myself, I should be able to think clearly without getting a headache. Yet I keep knocking up against invisible boundaries of my mind and body that weren’t there before. Mind over matter is powerful but not powerful enough medicine for me now.

And the other similarity to my childhood self? I’m still deeply sensitive to fairness. And this is what makes living with a brain injury so tricky at times.

A few weeks ago, my memory failed me in a potentially costly way. I’d been talking with a close friend when he said something about a dinner we had. I didn’t remember it. As painful as it is to admit, I told myself that he made the dinner up. No matter that I’ve got slivers of memories to go on but I was absolutely convinced that it didn’t happen. I dug my heels in and asserted that there had been many meals but no dinner with my mom. Displaying remarkable maturity and patience after my accusation, he didn’t debate me, just kept the conversation going. Minutes later, it came to me. We did have that dinner. I asked questions to confirm that the flash of memory was true. Yep, I was wrong and so I owned up to it and apologized.

Then it happened again. This time it was in a doctor’s office. I’m paying for treatments not covered by insurance so I’m pretty sensitive to the cost. I’d taken notes during our initial phone consultation. After my first appointment, a medical assistant gave me a  price list. Then my second appointment comes and I’m asked for payment. But it’s different from what I remember – I recall that patients paying out-of-pocket were given a discount. That same bloody certainty that I’m right kicks in. I softly but firmly say, “I’m sure I was told there was a 10% discount for out-of-pocket patients.” Back and forth until I ask to talk to the assistant who’d originally seen me with the doctor. She confirms the pricing. Still unable to believe that I’m wrong, I close with, “I’ll pay now but I’m going to check my paperwork when I get home.” I get home and discover that my notes and the price sheet match exactly what they asked me to pay. Oops.

Here’s where it gets tricky. What’s the playbook when my certainty isn’t to be trusted, when memory sometimes fails?

I explain my truthiness dilemma to the same man. I’ve been turning this one over in my head for days, turning it into a deeply existential issue of the integrity and trustworthiness of my self when he boils it down to two words. “F*** ‘em.”

I’m taken aback because I don’t make it a habit of dismissing the feelings of others. But, I respect him and know he’s got an idea here that’s probably worth listening to. I grab my “gratitude/remember this” journal (my first line of defense now) and write his words down,

“If you think something is true, go for it. Friends and family will forgive you if you’re wrong. F*** everyone else. Your only other option is to walk around believing that you are always wrong. Just trust your instincts.”

He’s spot on. How can I hold onto me if I’m second guessing myself all the time? My friends and family will forgive me if my memory goes cattywampus once in a while. And for everyone else, I’ll still push for what I believe is right in that moment (just as I always have) and if I’m wrong, I’ll apologize like I’ve always done. I think this is the best, most gracious thing that any of us can do.

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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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Brain Injury Journal

Grace hidden in a t-shirt

The t-shirt is bright red, the midsection a boxy shape too big for its intended contents. It is a gift from my sister. Holding up her matching one, mom shares that my sister bought these for the family. Of course she did. My sister’s gifts often veer to the absurd. Whether I think they’re funny or not seems beside the point.

My eyes still don’t focus all that well but I make out the words “THE FLOOR IS LAVA! ALL-TIME CHAMPION” through a blur of reds and oranges. No matter that her grown-up child has a brain injury and needs full-time care, my mom is giggling.

“Your sister said it’s supposed to remind you of when you were kids.”

That’s my mom. She copes with life’s ups and downs in three ways – she cries, she sees humor in oddball places, or she gets working.

While memories from that time are never detailed or complete, I am certain of two things, one, that I thought the t-shirt was garish (sorry, sis!) and two, that there was a joke that I didn’t get. I can only assume that I followed my mom’s cues and giggled along.

I’m sitting on a stone railing maybe a foot and a half wide, its few feet of height an insignificant barrier for the ground three stories below. I lean back against the warm brick and stare at the long stretch of daylight before me – I’m here because I hope that sunshine will somehow stem the sadness welling within. Noticing the paleness of my legs, I touch the jiggly skin of what had been my calf. I want to escape this body that I barely recognize, a body that fought me and only through medical interventions called a truce that I hope is lasting.

The red t-shirt dayThe tears come as I think about how hard and sad and frustrating it is to be half-healed, half-not. As I cry, I realize I’m wearing the red t-shirt. Twisting and pulling the front out to the side, I see a sloth with little finger-hands grasped around a light fixture dangling above a living room repose complete with couch, chairs, and lamps. And to keep the surreal motif going, lava floods across the floor. And I start to make the tenuous connection my sister must have made between our childhood and this shirt.

As kids, we played a game called “alligator” whenever we stayed in a hotel – two siblings jump from bed to bed while the “alligator” lies flat on the floor, eyes closed,  legs and arms flailing trying to tag the others. Get touched mid-air and your turn to be the alligator. Like all of our games, there is both danger and fun. The thrill is timing your jump to miss the alligator but a split second off and you might find your face hitting the corner of the night side table. It’s a game of survival, of staying off the floor.

With that childhood memory, I decide I can do this. I can stay off the floor today. I text my mom,

“Sitting on balcony Wearing that awful Red tshirt to cheer me up”

The family that is silly together...Minutes later, she replies,

“Hey let’s have a party”

There’s my mom and brother in their matching “alligator” shirts and inexplicably wearing colored animal masks. Even though I’m still crying, I’m laughing too.

As it turns out, the red t-shirt was just the gift I needed. It cloaks me in the grace of a loving family and reminds me that I can choose to stay off the floor, to not be a victim of the “alligator” today. Another reminder of God’s grace in my life just when I needed it most.

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Brain Injury Journal

(Mis)reading signs

Here’s a small example of what it’s like to be in my head right now. I was taking a walk and saw one of those signs you see in front of churches everywhere, “Bob’s Glory Shines Through His Creation.”

IMG_5281Hmmmm…Bob’s glory? I’m puzzled and pause. Who is Bob? Is he the church gardener? If he’s so talented, why am I not  impressed by the landscaping? Are they celebrating Bob’s retirement or something? Then something clicks and I realize it’s likely I “glitched.” Again. Ohhh duh, it’s God not Bob.

I call myself a dolt and keep walking but then it hits me. This happens to me over and over. Has this happened in front of other people?  People must have caught me in these moments.

But then I remember two things that a dear man in my life repeatedly tells me, 1) Be forgiving of yourself in these moments, and 2) Recognizing when something is “off” is a positive sign.

I’ll take that sign any day.

 

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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.

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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.

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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.

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