Brain Injury Journal

Mix Tapes & Memories

Last week I made a playlist for my niece. She’s off to a military school called SERE for aviators to learn skills in Survival, Evasion, Resistance and Escape. It’s an intense, break-you-down-to-build-you-up kind of training. The school is so hard that my sister has frost bite on her feet from when she went through it. I know this training is going to push my niece to her limits and I wanted to do something that would let her know I’m rooting for her.  I’ve shared before how much words motivate me  but songs are something else entirely. So I thought what better gift to my niece than a playlist that she can listen to for inspiration.

My first mix tape set the bar for me. Steven presented me with two tapes accompanied by a multi-paged letter explaining each song. He was deeply poetic, artistic and had an eclectic taste in music and the songs he picked reflected that but were also just right for me. And by the way, he still sets the bar high. For his wedding last year, his wedding website had a hilarious and fantastic song list accompanied by pictures and stories reflecting his and his soon-to-be-spouses times together. This is all a long way of emphasizing that the best mixes aren’t just ripping a CD with a random set of songs – that’s just being lazy. You’ve got to pull together a theme with a deeply personal compendium of songs. Bonus points for discovering a soon to be hot song or maybe opening your receipient’s eyes to an obscure artist.

Awhile back, I read the memoir Love is a Mix Tape and it put into words why I love giving and getting mix tapes. The best mix tapes tell a story. They take us on a journey. They make us feel something. Whether it’s on a tape, CD or Spotify, I think sharing music is one of the most personal gifts you can give.

So when I’m saving candidate songs for my niece’s playlist and I come across a playlist I created on Spotify with the generic name Summer 2015, I get really excited. This takes me back to when I first was sick and starting to recover from my brain injury. It’s like a gift from past me to current me.

A few things make it odd. First, I don’t remember making this mix tape. That’s because my brain wasn’t saving memories for a time. Second, and probably more strange, is that I had zero tolerance for any noise during that time so what was I doing listening to music?

Music used to be just a part of my life –  it was always on in the background, at home, in the car, wherever. But it’s all but disappeared since my brain injury. Part of my brain damage from encephalitis is something called hyperacusis or extreme sensitivity to sound. It’s gotten soooooo much  better over the last few years but in its worst state, the smallest sound would leave me crying with unimaginable headaches and totally unable to function. I still wear ear plugs when I’m out in public to keep noise levels down and I don’t listen to the same kind of music I used to and at nowhere near the same volume levels. A good day for me is when I want to listen to music AND I can tolerate it at a higher level than level 1 on the sound control.

This Summer 2015 playlist is from the early days of my illness and recovery and since I don’t remember making this for myself, I’ve got a little kid at Christmas feeling  wondering what’s underneath the wrapping paper? What was I trying to do for myself back then? Give myself strength? Courage?  Remind me that I could get through it? I know how carefully I curate my music so I’m fairly certain, there’s going to be a profound message to myself coming through the songs.

“The times you lived through, the people you shared those time with – nothing brings it all to life like an old mix tape. It does a better job of storing up memories than actual brain tissue can do. Every mix tape tells a story.” – Rob Sheffield, Love is a Mix Tape

I click and stare at the playlist. I recognize a few of the artists and they’re not in my musical canon. No offense to Carly Rae Jepsen but she wouldn’t crack my top 100 musicians list. Others are just totally foreign names to me – who is Fetty Wap, Leon Bridges, D.R.A.M., and Jamie xx?

I start listening hoping for a revelation through the songs themselves. Skip. Maybe the lyrics possess a special message. Nope. These songs suck. Skip. Next one. They’re random. They have no meaning to me. It’s a tortuous playlist. Aside from the tear-jerking See You Again by Wiz Khalifa/Charlie Puts, there’s not a single song I’d ever listen to. Maybe with the exception of that time that my brain got squeezed against my skull and my brain cells started dying. Maybe then.

It’s a serious let down. I thought I was going to have this kick-a** soundtrack from the early days of my recovery that I can point to and remind myself what a fighter I was. Instead, it’s a spectacularly incoherent, hot mess of a playlist. And then there’s the whole idea that I was listening to Spotify doesn’t make any sense. If I could barely stand the sound of conversation, why was I trying to listen to music?

I think about this for awhile. In retrospect, it seems about right for my cognitive state during my encephalitis. I was “crazy” as my mom tells me. I made no sense most of the time. I did bizarre things. That Summer 2015 mix tape tells a story – I guess it’s the story of a woman with a damaged brain trying to make sense of the world around her and trying to hold onto the things she loved and had lost. It’s a story just like Rob Sheffield said, it’s just not the story I expected.

So here’s to my first real playlist in a long time and to my niece Emily for what I hope is just the right kimg_7680-1ind of mix tape for your big training. Remember these words, “You’re an overcomer
Stay in the fight ’til the final round
You’re not going under
‘Cause God is holding you right now
You might be down for a moment
Feeling like it’s hopeless
That’s when he reminds you
That you’re an overcomer
You’re an overcomer”

I love you, sweetie. I am proud of you!

Love, Aunt Jenny

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Brain Injury Journal

Lost time

When I was growing up, we had a beautiful grandfather clock that my mom’s parents gave to our family. I loved the clock – to me it was the most elegant thing in a home that was more floral wallpaper meets little house on the prairie. Then one day my beautiful clock stopped counting time. No jiggling with the chains or brass weights would make it chime again. It always gave me a sad feeling to walk in our front door and see that hand-carved wood and traditional gold clock face fixed perpetually at the same time.

Time has stopped for me too. I finally realized this a few days ago after another in a series of what I think of as my “glitches”. These are tiny moments where reality and my perception don’t always line up eye to eye. Recently, my mom was planning a trip to help me out and because she loves decorating, I got excited to show her my new living room and dining room set…until I remembered that she’d spent nearly a month in my house caring for me and had most definitely noticed the new furniture. There’s been a lot of little things like this. I have a recurring slip where every time I write the date, I write the month as either April or May. I attributed this one to just “one of those things” since my brain injury.  But then it started raining a few days ago and I thought how much I was looking forward to summer. Oh, and I love the long days and blue skies of summer!

That’s when it hit me. I’m not being forgetful every time my mind points back to spring. That’s when I started losing memories. Even though I experienced going from spring to summer, and lived through every month of it, summer 2015 is just not in my memory bank. That’s not to say that I have no memories, I have some. Just not that many and not the types I’m accustomed to during the sunny season.

My first reaction to realizing that I lost my summer was just plain sadness. Sad that I missed happy hours with friends on my favorite rooftop bar, sad that I didn’t have any summer hikes or barbeques, and sad that I never made it to the farmer’s market. Doubly sad that I didn’t have one of my amazing, last-minute summer vacations. Sad that I didn’t go on my family’s 4th of July camping trip and that I didn’t race with my sister and niece in a mud run we’d planned for nearly a year. It’s a thousand small griefs for the things I missed.

And while my body’s clock might have missed an entire season, I remind myself that I’m still here and I’ve got seasons ahead of me. For that, I’m grateful.

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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

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

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

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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