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

I just listened to a great podcast on autoimmune encephalitis with Dr. Eyal Muscal, a pediatric rheumatologist. Listen to the first 15 minutes or so to get an overview of this disorder and how common it is for doctors and mental health professionals to miss the diagnosis and instead treat patients as if they were having psychiatric issues.

There’s three things working against AE patients – it’s a rare illness, many mental and medical health professionals aren’t familiar with the symptoms, and symptoms often mimic mental health issues. I still struggle with hard feelings about my interactions with the medical professionals who treated me but I remind myself that they  were smart enough to diagnose me before I died.  Some patients are not that lucky.

Learn more about this rare illness at the Autoimmune Encephalitis Alliance.

In the Eye of a Storm – Podcast on Autoimmune Encephalitis

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Brain Injury Journal

12 life-changing letters: encephalitis

Below is a post I’m re-blogging in honor of World Encephalitis Day, a day to raise awareness of this overwhelmingly under-recognized illness. Please read Becky Dennis’s  12 reasons to care about encephalitis. It sounds cliché to say that IIMG_5793 never imagined it could happen to me but it did (reason #9 in Becky’s list). I got a brain injury (reason #2) because my primary care doctor sent me home after I complained of light-headedness, dizziness, photophobia and difficulty finding words. I’m not unique. Encephalitis is a trickster of an illness (reason #6). It does not come on suddenly like a stroke. Even if you can get past the gatekeeping of a primary doctor to see a neurologist, patients frequently get told nothing is wrong because an MRI and spinal tap might not show a darn thing (check out reasons #5, 7 and 11). That happened to me. Twice.

Sure, I am lucky that I got treated quickly enough that I didn’t die (reasons #1 and 8) but not lucky enough that I emerged unscathed (#4). While I may look the same to you, my brain and my life are not the same. I live every day with headaches and a cocktail of extreme fatigue, sensory dysfunctions, and vertigo. The physical residuals are tough but the changes to how I think and process now are even harder (#12).

Check out the post below from Becky Dennis for 12 good reasons why you should care about this illness. Please spread the word…for all of us.

Source: 12 life-changing letters: encephalitis

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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

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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