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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Everyday Life

Meet Mr. Johnny Cash Part 1

I have a new member of my household. I have not come up with a way to explain how (or why) I adopted Mr. Johnny Cash (né Rigatoni) that doesn’t make me sound impulsive and slightly crazy. Maybe even crazy cat lady territory crazy. You can be the judge…

img_1488Back in July, I’d gotten a text from Chip, one of my best friends in life. He shared he’d been traveling for three weeks, had just gotten home and fed the feral cat who hung around his place waiting for her meal (ticket?). Situation normal until he goes out for a swim and comes back to discover the stray and a pile of kittens under his bed.

Most people might try to find the nearest shelter and drop the cats off. But, Chip has a soft spot for any and all little creatures so he stocks up on supplies for the new momma cat and outfits her and her babies with a temporary bed. Fast forward a week and he’s going to hit the road for another extended trip. He decides the best course of business is to offer a very generous donation to the local humane society to ensure this little family gets taken in.

I’m not sure what tickles me more – the fact that this momma cat had the street-smarts to give birth in Chip’s house knowing he’d take care of her or the fact that Chip gave an obscene donation to ensure the stray and her offspring get the five-star shelter treatment.

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How could I say no to this little guy?

Since part of Chip’s and my history is that we had cared for two oddball, senior cats together, in my  mind, it seemed fitting that I’d help him out with this bunch. I assure Chip that I’ll take one of the kittens when they’re old enough. Chip  baits me with this birthday card and photo updates on the kittens.

Fast forward a few months and I get the call saying that the kittens are ready to be adopted. I realize a bit belatedly that I’ve not thought this idea through. I live a thousand miles away. I’ve never flown with an animal before. I need to buy kitten supplies and kitten-proof areas of my house. And, I need to do this all in the next thirty-six hours.

On Friday night, I sit down to my computer and start planning. First, make sure my little baby will not get adopted by anyone but me. The kind (and sensible) people at the humane society aren’t really clear on why this woman from another state is calling them and wants assurances that they won’t adopt out “my” kitten. They ask if I’ve met “my” kitten yet. Hmmm…I try to make my story sound normal. Pretty sure it doesn’t.

In a spurt of productivity, I book my airline tickets. First-class because well, I don’t know if the coach seats will be big enough to fit the carrier and I will not put a kitten in the belly of the plane. Add $125 ticketing fee to travel with a kitten that’s not even four pounds. Now find a pet-friendly hotel. Oh, and cancel all my weekend plans. Attempt number two to not sound crazy explaining the cat adoption story.

Two hours later, I’ve got my trip planned and head down to the local pet store. It hits me. I’ve never even met this cat. What if we don’t get along? What am I doing?

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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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