Tag Archives: encephalitis

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

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

Learning grace from my friends

So many of you have emailed, texted and called after reading my last post. THANK YOU. Your outreach lifts my day. On top of all the kind words, I have gotten questions. Here’s answers…

1) What happened?

The simplest explanation is that I had a virus, I was treated for it and then my body failed me. The medical diagnosis is autoimmune encephalitis and ataxia. The longer and fancier words include the preceding virus. In case you don’t want to use that medical tool called the internet, ataxia is when you lose muscle control and coordination. And encephalitis is a swelling or inflammation of the brain. Trust me, bad things happen when your brain swells.

The neurologist explains all of this in simple language. And why wouldn’t he? Maybe it’s because I have a brain injury that affects my cognition though we all know the real reason is that I’m not educated in the workings of the body to understand anything more complicated than “my immune reaction was confused.” But I want to know why? And not the metaphysical “why” (I’ll save that for another day) but why did my body do that. Could it happen again? More to come there.

2) Did you know something was wrong?

Yes and no. I had been on the mend from being sick but something wasn’t right. I was worried enough to email my doctor. When I saw a PA a few days later and couldn’t put words to what that “not right” feeling was, he listened and sent me home saying I was out of sorts from my viral infection but I should be fine. By then I wasn’t able to recognize my symptoms as worrisome. Why can’t I put a piece of gum in my mouth? 3 pieces of Trident sit on my desk and one in the trash but what’s going through my head is “there is something really wrong with that gum.”  I sit there curious – but not alarmed – about this poorly behaving gum. Then the phone call from my doctor’s office and more calls. 14-mile drive to the hospital? No can remember. And so this journey began.

3) Are you okay? 

No, I’m not. Really. In a short period of time, I lost everything I know about myself. And even though I’m recovering, there’s a litany of ongoing symptoms that make daily life hard. However, I am brought to tears (literally, I cry when I see my friends now) by friends and family and church members who’ve been so gentle and caring and giving to me right now.

4) Don’t you feel lucky? That could have been really serious.

You mean really serious like I could have died? Yeah, I wish I could say that I feel like I dodged a bullet but I don’t. Something is stuck in me and I don’t feel that profound sense of gratitude for my life that I know I should. It’s too soon. Maybe it’s cognitive dissonance that this is happening (translation: I need to fully accept that this sh**’s real) or maybe it’s too traumatic but given time I will have a different and more respectful perspective.

5) How can I help?

This is without a doubt the hardest question because asking for help isn’t how I was raised. I could blame my parents for making me too independent but that independence comes with courage and hope and the toughness to keep going when things get hard. I’ll never trade those in. While I’m being given the opportunity of a lifetime to get better at asking for help, remember, I’m still a novice! Open-ended offers are wonderful but harder for me to respond to. Throw something out there, anything and let’s go from there. It’s a lot easier to say “I don’t need a ride tomorrow but I’d appreciate it if you picked up a few groceries” or “I’ve been home for days and the only people I’ve seen are medical professionals so yes, a small visit would be amazing… oh and you’re bringing food, thank you, I’d love to catch up over a meal.” A neighbor showed me the way with this simple note, “I’m awfully sorry. Are you seeing visitors now? Can we come and visit and bring groceries?” Nailed it. Now I know what to do for others.

And to directly answer the question, I need practical help with groceries, occasional meals, driving and errands. And just as importantly, I need your kind words and prayers,  your company and your positive support.

And the last question is from me. Where does grace fit in all of this?

I know in my heart of hearts that this learning to ask for help, learning to accept help and learning to allow myself to be loved and cared for by others is something I am supposed to learn. It’s teaching me to accept grace whether I feel like I deserve it or not. Dropping off strangely specific grocery requests, bringing a meal or just hanging out and helping with some housekeeping might seem a modest effort, but I assure you that it is not small in my book. You are giving me something so much bigger. You are giving me grace.

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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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