Tag Archives: truth

Brain Injury Journal

Reconciling Lies and Truths

A few weeks ago, I was catching up with my aunt when she asked whether I got down or depressed by my brain injury. My response was something like, “No, I have such a good support system, I feel so loved that I can’t feel bad about things.”

WHAT?!? I’m a pretty happy, even keeled person by nature but the most unthinkable thoughts have passed my mind since I had encephalitis. I’ve also had moments of extraordinary love and joy. As it turns out, these ups and downs are clinically known as “emotional lability” and pretty common with brain injuries. I wasn’t familiar with the term until I saw it in my doctor’s notes and asked what it meant. In the span of 10 minutes, I’d laughed, cried, and laughed some more so I couldn’t deny my mood swings. And I giggle typing this now, but as if my doctor needed more evidence, I started crying and using profanities that I didn’t want to be like this. The point is, I have had all the expected emotions for a person who’s gone through trauma and grief.

So hours after that call with my aunt, I’m in my jammies and sobbing because the pain in my head is unbearable and I am helpless to stop it. That’s when I realize the dissonance in the reality of my emotions and what I told my aunt. In fact, I’ve told everyone who has asked that I’m doing remarkably well generally leaving out the ugly parts. Maybe I’ve told half-truths because I’m trying to assuage other people’s feelings about my illness?  Or, maybe because it re-directs us from the ickiness of my health?

Well, context matters. My aunt wasn’t just curious, she’s now a caregiver. My  uncle suffered a grave brain injury three months after mine and his family is in the early stages of the aftermath. It’s serious. I am rooting for him though I know his journey is not an easy one. My aunt deserved the full truth. Really, everybody does, but this part of my family especially needed honesty.

This realization made me want to know why was I lying about not being sad?  Two truths emerged.

1) Because I don’t like being vulnerable. As it turns out, being in pain makes you vulnerable. Since I experience pain every day whether from cognitive or sensory overload, nerves going haywire, or ferocious headaches, I’m as vulnerable as I was as an infant. I. DO. NOT. WANT. TO. ACKNOWLEDGE. THIS. TO. ANYONE. It’s been twenty-two days since I can remember a day that I didn’t have a headache. I keep a daily health journal monitoring my physical symptoms noting things like, what was my fatigue level today? Was I dizzy? Did I have hand tremors today? Any nerve pain? Did I have difficulties with my words? If so, what were the circumstances? Did I stay on task or did I have attention issues? Did my thinking seem clear? How was my light and noise sensitivity?

On better days, I succinctly write notes like “at work for three hours, 2 meetings, rest of time spent writing. Snacked apples and carrots. Pain in right temple and eyes tired after meeting. Put ear plugs in and closed eyes for a few minutes at desk” But the last few weeks, my notes have slipped into the repetitive, “BAD headache,” “OMG headache,” “terrible headache” and on October 28, I just wrote “headache headache headache headache” as if repeating the word would reflect that we’d moved past a 1-10 pain scale to the Richter scale. I don’t remember writing “hurts head” and “bad head” but there it is, the pain so overwhelming that I lost my command of grammar along with the power to precisely describe my experience.

2) To motivate myself. One of my favorite quotes is D.H. Lawrence’s brutal and startling truth,

“I never saw a wild thing sorry for itself. A small bird will drop frozen dead from a bough without ever having felt sorry for itself.”

While laughter and love usually propel me, when things are tough, I never feel more powerful than when I cowboy up. That’s what a girl from the country does – she makes a plan and starts moving. In practice, my “be strong, be happy” coping mechanism requires me to ignore the full spectrum of my emotions and wholly embrace Lawrence’s maxim. Keeping myself emotionally psyched up is why I never wavered from my exercises to work my coordination, my balance, and my memory. Following my plan saved my life this summer. But, it’s time to let my guard down.

So if I could do that conversation over with my aunt, I’d say this:

Yes, I am depressed as I go through the reckoning that I had a brain injury. I am scared because I don’t know what the end state looks like. I am even more scared because this wasn’t a fluke, my autoimmune system caused the encephalitis and it could happen again. I get Eeyore sad when I think I “should be able to” do things but can’t because I have sensory overload or I’m too tired. It’s unbelievably lonely when you realize that people close to you don’t get what you’re going through. Some days I get really down by what feels like a glacially slow recovery.

And yet, I have more contentment in my life than I can ever remember. I’ve never loved myself more or been more proud of myself. I’ve experienced unbelievable generosity of spirit and kindness from friends and that fills me with joy. I’ve never felt so close my family. And, in the darkest moment of my life, I experienced transcendence and knew that my life was in God’s hands. So, I’ve had good days and awful days and you know what, the spectrum of all of this has never made me feel more alive.

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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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