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

Working hard

It’s been a far longer gap than I intended between posts but there’s a very special reason for this. It’s because I started back to work! Even though my part-time schedule is taxing me far beyond anything I expected both cognitively and physically, the satisfaction I’ve felt at earning my livelihood by my very own brain – brain injury and all – is indescribable. I’m just so proud of myself.

What I couldn’t imagine before my injury is the hard work that would go into barely being able to put in the equivalent of two work days in a week. The months of occupational, physical and speech/cognitive therapy plus my home program.

From time to time, a well-meaning person has asked me, “how are you spending your time?” I don’t like admitting these sorts of things but my inner judgey self would translate that as a back-handed way of saying, “it must be nice to have all this time off.” I’ve always known there was no shade intended in the question, just a conversation starter for people who probably didn’t feel comfortable probing for the latest on my health. Still, the question would make me wonder, was I using my waking time well? Was I doing all that I could to heal, to rehab and exercise my brain and body so that, with the grace of God, I could recover from the far-ranging effects of my brain injury?

The truth is I’ve never worked harder in my life and I was raised in a family who believed in the good ol’ Protestant work ethic and got by on the hard labor of railroading and whatever else  might put food on the table and warm the house through the long stretch of winter. “What you put in is what you get out” ranks as probably one of my parents’ top 10 life lessons for me. That’s why I was incredulous when my occupational therapist told me she didn’t see a lot of people with my perseverance. Doing my rehab plus more is a given to me. This is my life. The rest of my life.

While I was seeing my physical therapist, my occupational therapist, my speech/cognitive therapist and my neuropsychologist weekly, I’ve now graduated to every three weeks for OT and PT but am still weekly for the others. I usually have a doctor’s check-in or two somewhere along the way. I had acupuncture to treat symptoms but let that lapse in favor of doing something called hyperbaric oxygen treatment. It’s the same treatment given to people with the “bends” and there is evidence, though not conclusive, that it helps with brain injuries. Frankly, I’m not willing to wait on the science to prove that it’s helpful or not so I’ve embarked on it and think that I generally feel better after my treatments.

And besides my part-time work week and therapy schedule, I now sleep ten hours a night up from six to eight before the injury. This is no luxury. The best way for the brain to heal is to let it do its work while resting. And while I don’t like the insane need for sleep I have these days, I know the side effects are worse. My speech starts to go, I get blazing headaches and I do very absentminded and sometimes, dangerous things. I take about an hour nap every day. Again, not optional. So while the old me bucks against these unfamiliar limits, the me today knows that trying to go, go, go is just not a good choice.

So I’m unashamedly sharing that I’m proud of myself. Life gave me a different song than I wanted but it was my choice to dance rather than sit this one out. I’ll save for another day the story of my dear friend who helped me build my home program and my gratitude to her. Right now, I’m just celebrating this milestone!

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Brain Injury Journal

A small confession

I have a confession. In my last blog, I posted a picture of me as a baby with my dad. At least, I thought it was me. Soon after, I received a text from my mom, “call me.” A voicemail and another text later, my mom writes, “I don’t know if it is worth mentioning but that is not a picture of you with your dad. That is your sister.” Hmmmm… now that I think about it, I remember thinking that the couch looked REALLY dated. Oops.

When I talk to my mom, she says she prayed over whether to tell me or not because she didn’t know if I made the mistake because of “my issue.” Side note: Is that what we’re calling my brain injury now, “my issue”? I certainly have to contend with that but I didn’t get confused by the picture, I just thought it was one of me. I giggle because, well, what am I going to do about it now? I tell her that I might as well keep it up there until I find a replacement one. Then she tells me that this is how fiction becomes fact. Thanks, Mom, I thought I got a pass for “my issue.”

But, then I go from an embarrassed giggle to really laughing because maybe the joke’s not on me – my dad didn’t even mention the picture when he told me he was touched by the story about him. So my mom is concerned enough about my feelings to pray overnight and my dad doesn’t notice. This sounds suspiciously like a set-up for a sitcom gag, right?

I was okay living with the baby-picture-that-isn’t-me-on-the-internet when I realize that it might really hurt my dad’s feelings if he finds out that he didn’t recognize a picture of his own daughter. I will admit that I went through my options 1) replace the picture, 2) don’t say anything or, 3) buck up and tell him. Option 1 seems like the path of least resistance…except I go through every family album I have and there’s not a single picture of just me as a child with my dad. I’d prefer option 2 except there’s a flaw in this plan too. My sister has already razzed me about impersonating her on the internet and I know it won’t be long before she relays this to my dad.

I’m motivated to protect his feelings so I make the call. I feel terrible that I misled him about the picture – especially because I’d wanted to acknowledge how much my dad’s caring has meant to me. When I get my dad on the phone and tell him that I’m sorry but I made a mistake about the photo, he says, “I tried to tell you that wasn’t you a few times. It’s your sister. But, I guess you didn’t remember and so I didn’t want to hurt your feelings about it.”

Oh my, we have come full circle. My mother wasn’t sure whether to say anything to protect my feelings about my brain injury. I sweated this one out to protect my dad’s pride as a father. And my dad stays silent to protect me from feeling bad about my memory gaps.

I’m not sure whether there is a lesson in any of this. Maybe it’s something as simple as knowing that I’m surrounded by people who all make choices to help and protect one another as best they can.

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Brain Injury Journal

Words that give me hope

Every now and then I slip a particularly poignant note or card I’ve been given under my mattress. The “keepers” are the ones that inspire me, remind me that I’m loved and deserve great things. Maybe I tuck them out of sight because I can’t stand clutter – no vision boards for me – but the truth is that a part of me believes that having these cards under my mattress holds the sentiment closer to my heart. What determines what I keep is the semantics, the meaning that someone had when they thought of me and put pen to paper. It’s my brother counseling me on a difficult relationship, “I say this with love and compassion,” my sister sharing, “you have always been the lift in my sails,” or a special person simply signing a card, “with all my love.” I deeply believe that what they write is true and I’m meant to hold those words carefully.

But sometimes, the “keepers” I hold close to my heart don’t come in the form of cards but in conversation or text. There’s two recent ones that I’ll share.

The first comes from my dad. Even though he lives over a thousand miles away, he’s been part of my recovery through our phone calls. What had been a weekly call on my drive home from church has turned into evening calls throughout the week. The Sunday routine was simple – dad would ask about the sermon and that would trigger conversation about life or something that happened earlier in the week and occasionally, he might share a story about his childhood. During football season, his part of the conversation moves to a detailed, occasionally outraged recap of the latest Cornhuskers game.

But now, instead of calling him from the car, we talk in the evenings while I’m walking. And our conversations now veer to the latest from my doctors or how I’m feeling that day. My regular walks – not every night but most – are part of my rehab. They’re helping me build stamina and coordination. In the aftermath of a brain injury, a common side effect is extreme fatigue and in my case, I also experienced ataxia so I have had unbelievable vertigo with a stilted gait and balance problems to boot.

One of my first goals became to walk to the park a few blocks from my house by myself. It’s not far – maybe a five or six-minute walk when I was healthy – but even so, the first few times I went I had explicit instructions to text or call when I got there, text when I was leaving and when I got home. I didn’t mind that the rules hearkened back to check-ins with my parents when I was a teen and out after dark. I needed people looking out for me – especially with my memory and judgment far more impaired than your normal sixteen year old’s.

By the time I’d get to the park, I’d be exhausted and need to rest. I’d find a place to sit and call my mom or dad while I watched the sun go down. I’d munch grapes or a handful of nuts, my compulsive snacking driven by an odd, new fear that low blood sugar might further damage my brain. I’d explain that I was sorry I was chewing in their ears but I had to get some energy for that walk home.

As my walks continued, I got confident that my right foot would lift the way I wanted it to and I wouldn’t trip, or at least, I wouldn’t fall on my face if I took my favorite route. I’d been avoiding this, the prettiest street with an elegant curve and giant trees lining it, because the sidewalk buckles, its cement ceding to century-old tree roots. I decided to walk it. My ankle buckled but I didn’t fall. The next time I took it, it got easier. I still had problems stepping off curbs but that seemed to be the vertigo more than my coordination. A sign of real progress was when I started calling my mom or my dad on my way to the park. They patiently listened to my incoherent patter as I literally re-learned to walk and talk at the same time. I never forget that I have amazing parents.

And then one day, I’m walking and legitimately holding up my side of a conversation with my dad when he says,

My dad and me

“Baby girl, you’re doing great. You’re getting stronger. You’re not breathing as hard as you used to.”

All I could say was, “Am I really, Dad?” I was thrilled. My dad tells it like it is.

I’m too close to always see the changes in me, or more accurately, I’m too busy judging what I “should be like” than noticing the incremental improvements. But every few weeks, my dad has told me that I’m getting stronger. His only thing to go on is my voice and my words over the phone but that is enough for him to know that his daughter is coming back. He tells me my lungs are getting stronger, that my vocabulary is returning and that I’m talking more quickly and less deliberately, that I sound more like me. I need his words, they strengthen me.

The second “keeper” came by text from my recently retired pastor. I adore him and appreciate his wisdom and his spiritual and life counsel. His sermons moved me and taught me. An absolute lover of people, he spent decades surrounded by parishioners and yet like the good shepherd he will always be, he cares for me in a way that always makes me feel special. And so by text, he checks in on me and one day, he writes,

“You are a warrior.”

Something about those words stick with me. I know he’s guided untold numbers of people through deaths and all classes of sorrows and that through those, he’s probably seen the entire spectrum of the human spirit – our fragility, our sadness, our courage. So I’m pretty sure he’s got a sense of what nudges different people. And boy, I needed those words, “You are a warrior.” It reminds me that even if my body is temporarily diminished, I’m still strong in spirit.

I might not be the next Ronda Rousey but I did take one heck of a knockout punch in the ring of life and I’m still standing. And tonight, I talked to my dad and he said those words again, “Baby girl, you’re doing great.”

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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…

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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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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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