Find Part 1: A Look Behind the Scenes of Emotional Breakdown here.
Surveying the Recovery Landscape
You’ve heard that autoimmune encephalitis (AE) recovery is slow.
Good doctors—the ones that mentally prepare you for life after the worst of your acute symptoms have dissipated—tell you to be kind to yourself as you recuperate.
But what does that really mean? What does that actually look like? And what does that feel like?
Well…. it’s complicated. You’ll know exactly what I mean, if you or your loved one have been on this path awhile.
If you’re new to the club, I’m sorry you find yourself in this position. I hope you’ll be one of the lucky ones back on their feet in little to no time; but if not, know that you’re in good company and can find a community of others dealing with the challenges of AE recovery here.
The reason why it can feel like you’re left in the dark is because there’s no one-size-fits-all picture of what long-term recovery looks like. Encephalitis affects multiple domains of existence in a strange variety of ways, resulting in a reality that looks different in each individual affected. So if you’ve been left thinking that Google searches or consults with healthcare professionals are frustratingly vague: you’re right.
There’s little out there that truly captures the day-to-day experiences and thoughts that cross your mind when you’re recovering from a serious brain injury.
Some of the common themes that permeate my own experiences in recovery from AE and reflect the type of conversation I notice in patient groups relate to loss, change, and uncertainty in the context of cognition and personality. In contrast to the emotional breakdown I wrote about in Part 1 of this series, this post will provide a more global overview of the types of emotional difficulties that AE survivors go through.
Again, keep in mind that the individual experience and response to these challenges can vary significantly from person to person. What’s relatively universal, however, is the significant level of immediate disruption to the encephalitis patient’s pre-illness life. It’s a serious exercise of strength, willpower, and determination to bounce back, with few—if any—recovering from encephalitis as quickly as they would like.
Fear not, however. Many of us make full (or nearly full) recoveries and go on to live more enriched lives, in part because AE forces us to reevaluate the things that are most important to us. Just don’t be too surprised if you find yourself needing to recalibrate your expectations as you recuperate, as you learn to work with the individual recovery process that unfolds for you.
On Cognitive Alterations
Honey, I shrunk my brain!
Let’s start with arguably the largest setback to overcome: your brain just ain’t what it used to be.
I’ve met or read the stories of students, nurses, athletes, writers, a lawyer, a pastor, and countless others suddenly afflicted by encephalitis, often in the prime years of their life. As for myself, I was in the midst of completing a professional degree program in the health sciences. Based on marks, enthusiasm, and aptitude, the director/assistant dean (wrongly) had the impression I would be going on to apply to med school after graduation (in reality I was just a clueless tryhard).
Nowadays—after my recent relapse—the idea that I once gracefully rose to those types of demands feels like a laughable, delusional fantasy. Present-day me would find more than enough stimulation and challenge from an entry-level retail or customer service job (though I’m optimistic that the craving for bigger undertakings will return in the months ahead).
The majority of others post-encephalitis find their life plans put on standby, too. Some make a phased return to work after a prolonged sick leave, often with accommodations or reduced hours; some gradually reinvent themselves in a role that utilizes a different skillset; some are eventually forced to get creative and find meaning from immersing themselves in less conventionally challenging pursuits.
The reason? Encephalitis significantly messes with your cognition.
It inflames your brain, leading to sometimes permanent alterations to physical structures inside your skull. This means that many of the mental tasks you used to perform without a problem are suddenly beyond your grasp.
Responding to customers and thinking on your feet. Memorizing product lines. Manipulating numbers in Excel. Holding multiple pieces of information in your head. Concentrating during meetings. Hand-eye coordination. Comprehending standard operating procedure documents (SOPs) and executing all the steps. Conveying coherent, organized thoughts in a professional manner.
Maybe you can relearn how to perform these tasks; maybe you can’t. Some days you feel like you can scrape by and take on some “higher level” tasks; other days, your brain is stuck and won’t do much more than simply exist—despite how determined you might be to do more. This day-to-day (sometimes moment-to-moment) contrast can be frightening to experience, especially if you’re attempting to take on more responsibilities at work or home and others are relying on you to do your part. Your levels of confidence in yourself will be tested.
Endure enough of these turbulent cycles, and it’s easy to become tormented by an undercurrent of anxious thoughts. You wonder how long it will finally take for each of your cognitive faculties to stably return, and to what degree—if they do at all.
The double meaning of Brain on Fire
It’s uncomfortable having to confront what you are and aren’t capable of anymore, particularly when the target you’re trying to characterize continues to evolve in an unpredictable way. My recovery from AE feels like a wild state of flux, where the phrase “my brain is on fire today!” can mean one of 2 antithetical things—either:
a) I’m functioning relatively well, or
b) inflammation is short-circuiting my neural connections, leaving my head feeling like a muddy pool of jelly.
On the bright side, I suppose these fluctuations mean that things in my brain are still shifting around—that it hasn’t settled into a permanently compromised state. Thus, I have good reason to continue to hope for improvements. Three months out from my latest Rituximab treatment, the cognitive threshold within which I’m able to function seems to inch upward; but it’s painfully slow, moreso than the first time Rituximab got me back to baseline.
In any case, it’s tricky to incorporate any level of serious planning—short-, medium-, or long-term—into my life. You can easily find yourself misjudging where you’re at. Earlier on in my illness, I thought I had recovered enough to return back to university; instead, I found myself dropping out a second time. I eventually wormed myself into a fulfilling, stable career in marketing/communications; but in my present state, producing the same quantity and quality of work that I used to is out of the question.
I do daydream of resuming my career eventually, though when? I’m not sure. Recovery from relapse seems to have taken its unwelcome place as my full-time job. Believe me though: I would much, much rather be working my butt off making a good living in my previous role.
I find work rewarding. This career pause isn’t. Most days I’m at peace with the fact that this is just how things are for the time being; but that doesn’t stop some negative feelings from popping up now and then.
I’m tired of how frequently I get overwhelmed by simple tasks of daily living, and need to curl up on the couch. I’m tired by the frustration of knowing that I’m not actively contributing to society in the way that I thought I would be at this age. I’m tired of feeling like time is slipping through my fingers, far from maximized to its fullest potential.
Learning to cope
Some might argue that you need to push yourself and learn to embrace the discomfort that comes along with pushing your cognitive limitations.
However, as someone who has tried this in earnest before, I’m here to urge you to please be cautious with how far you take this line of reasoning, and learn to find a balance.
As I hinted at above, I don’t think returning to a full semester of university then dropping out again did me much good—other than to prove to the part of myself in denial that yes, I really am battling significant health impairments and no, I’m not just imagining my levels of cognitive limitations or constructing elaborate, self-inhibiting excuses for myself.
After receiving AE treatment, one of my docs warned against the detriments of resuming my previous routines too soon. That if I confronted my limits too frequently, I would end up frustrated; and if I overdid it, the accompanying emotional spirals would set me back further than if I had taken a more gentler, steady approach in recovery.
This may not be the right counsel for everyone. But for the type of person born with the innate desire to push the limits of their potential, I’ve found this advice to be increasingly true. Much to my displeasure, I’ve discovered there’s some sort of stress-wellbeing feedback loop that deserves a healthy level of respect. Disregard it and you’ll be left spinning your wheels.
You can’t just brute force your way back to the capabilities you had pre-illness. Your energy is limited. As many AE survivors can tell you, overexert yourself today and you’ll just find yourself borrowing time plus interest from tomorrow.
I think there are healthy habits and attitudes you can adapt to increase the speed of recovery, but a significant portion of heading back towards baseline is going to take a sheer amount of patience.
If you’re a natural doer, I get the impulse to object. It’s hard. You feel a loss of control, like life is happening to you rather than being crafted through intentional action. One thing you may want to explore is the idea of non-doing, and mindfulness-based stress reduction. I intend to cover how I’m starting to apply these concepts to my life in a future post.
On Personality Changes
Change… what change?
I hadn’t considered how encephalitis may have altered my personality, until it came up in conversation with a fellow AE survivor. Since then, my mind has become more sensitive to noticing this topic of discussion in a handful of AE patient groups.
Somehow it hadn’t occurred to me that post-encephalitis personality changes can be a spectrum. On one side you have those who have undergone significant change; it seems to me that this is most typical in those that dealt with prominent psychiatric symptoms during the active course of their disease.
On the other side, you have those in which any subtle change is simply an after-thought. Like me—I think. Since I’d put myself on this far end of the extreme, be forewarned that these thoughts may not be so representative of the “AE norm.” I know some people deal with some genuine, fundamental personality changes; that’s a different can of worms I’m unable to address through personal anecdote.
Anyway, back to unraveling my own experiences. There’s little doubt to me that encephalitis has left an indelible mark on the way “I exist,” but when does that qualify as a change to my personality? I’m not sure. I flipflop back and forth on whether or not I feel my personality has changed—I normally attribute most of the “change” to my cognition.
Maybe I’m just splitting hairs and the question is merely one of semantics and interpretation; regardless, I’d like to try and explore it further.
Tracing the changes from hospitalization to now
I see many fellow AE survivors wonder “when will I feel like myself again?” This used to cross my mind often, earlier on in my recovery, when I felt like the “me” inside had become lifeless and dull. My thoughts were either absent or moved achingly slow, and I mounted minimal internal—or external—response to questions, stimuli, or events happening around me. I was keenly aware of this shortcoming, too; try as I might to generate anything of colour or substance to say, my mind fell short.
I was simply blank a lot of the time.
On the other hand, I had some uncharacteristic spells of irritability when I returned home from the hospital. I’ve seen other survivors and caregivers write about similar reports. To my mom’s credit, she gently dealt with a moody version of me that didn’t exhibit the gratitude to her that was warranted. It was quite easy for me to become aloof and annoyed.
When I would recognize this in myself, I’d shuffle off to my room and try to apologize to her later. It’s not excusable, but I remember feeling this deep-seated loss of control over any aspect of my mind—and unrestrained, erratic emotions instead. The latter left me with guilt over what a pain I felt like I had become. My mom went through a lot with me during this transient period, and I’m incredibly thankful that she stuck by my side with support the whole time. Sometimes I’m still more emotional (in both directions) than I used to be, but not in a way that anyone is concerned about.
With treatment, things have shifted back towards centre. I can generate my internal world without much trouble, and my thoughts and feelings have resumed a sense of familiarity. Albeit, they don’t reach the same depth or texture they used to; and at times they feel a bit… mechanical. Like I have to rely on learned, canned responses at times; or I can only muster replies to things in a very literal way rather than with my own sense of style. The bulk of my wit and sense of humour are still buried somewhere I have yet to unearth.
Basically, I feel like a subdued version of myself with half the vibrance I’m used to exhibiting. But I at least recognize the girl inside. She comes out most readily around those who were close to me pre-illness, or those well-acquainted with the context of brain injury. In other words, those with the patience to hear through the sloppily translated words that make their way from my brain to mouth.
I’ve complained a lot about verbal fluency issues in other posts, and I wonder how much that accounts for the difference in how I carry myself. It’s kind of hard to let your outer spirit run wild when you end up preoccupied with how to dress up formless, disorganized thought bubbles into something more than verbal gibberish.
Which brings me to my external-facing personality…
In the social spotlight
On the surface, my personality seem loads different than how I was when my AE was inactive. People knew me as a vibrant firecracker with a healthy dose of sass. Meet me now in recovery, and that seems pretty far-fetched. I’m a quieter, reserved version of what I was when encephalitis knocked me off my feet.
Again, I’m inclined to think of this as one of those cognitive things. My processing speed is much slower than it was previously, taking me longer to evaluate situations and respond appropriately—even moreso when I am amongst those I don’t know well, when I end up expending some precious mental energy quelling internal tugs of self-consciousness. My sense of timing has been thrown off, as has my ability to catch the natural rhythm of a conversation. I miss feeling competent, confident, and socially adept. It takes a lot of thinking to figure out what I want to say, whereas it used to be natural for me to quickly collect my thoughts and express them on the fly.
Honestly, I’m still trying to figure out for myself how to be okay with the present iteration of me, and integrate my experiences with AE into part of who I am without overtaking who I am. I have trouble doing that without letting lackluster social experiences negatively shape that process and warp my self perceptions. Together with the excess energy it takes me to hold conversations these days, it can take more than I want to admit to convince myself to be socially active.
Notably, I do find comfort in engaging with family and friends that knew me well pre-encephalitis, as well as those I’ve met in the AE community. It helps to surround yourself with people who can look past any cognitive limitations you’ve developed, and recognize the inner you. I’ve also found myself reawakening parts of “me” that I had forgotten about in those wonderful, carefree moments of laughter and connection engendered through positive social interactions.
Learning to cope
I’ve always thought of the aforementioned challenges as a byproduct of my cognitive deficits, but I can appreciate that others experience primary concerns with adjusting to new features of their personality. The other day, I saw a caregiver describe their experience as being “like living with a whole different person.”
In the course of writing this, I realized that there might be some freedom in taking personality changes “less personally” and seeing them as a symptom of AE. If you’re not feeling like yourself, there’s merit in recognizing that the way your personality is manifesting could be just as temporary as the cognitive issues brought on by AE. That the “you” you used to know is just dormant, waiting to be revitalized.
I hated the excess irritability I used to exhibit; but that turned out to be relatively temporary and lessened drastically with time. If you’re a caregiver wondering “when will I have my loved one back,” please hang in there and know that somewhere inside of them, they appreciate the patience and compassion you provide through thick and thin.
At the end of the day, we’re all just specks of dust floating through an incomprehensibly expansive universe.
Whether bouncing back occurs in a couple months or recovery remains a multi-year work-in-progress, the impacts of autoimmune encephalitis leave an indelible mark on those of us who have been touched by it. It’s an illness that zigzags through the land of loss, change, and uncertainty in a way the previous “me” would not have been able to fathom.
If this post has resonated with you, I want you to pause and recognize the strength and determination you’ve cultivated in getting here. Sounds cheesy, I know. But it’s easy to get lost in some treacherous weeds, and forget to take a step back to recognize what you’ve been through. In my case at least, a lot of the mental despair related to recovering from AE can be alleviated with a shift in perspective.
When I’m upset with the state of my brain and nothing makes much sense—how did I get here, why am I going through this?—I try to be kind to myself and tap into a state of awe.
My body has carried me through this mad journey.
I’m actually alive.
Few (outside the AE world) would understand what I or my mom have fought through.
We still laugh.
There are so many dreams I still have left to realize.
Doesn’t always work; but there’s solace in knowing I’m at least training the mental muscle for it. Don’t underestimate the resilience you’ve built in the course of your recovery.