October 14, 2020 | By WhereAreMyPillows.com
It’s a lovely day in the neighbourhood. The sun is blooming, birds are shining, flowers are sing—wait; that’s not quite how it goes.
Then it hits you: oh yeah, your brain is injured.
These days, my mind runs loops that straddle the line between normal thought and garbled logic. Innocuous at first glance, maybe; but troublesome when the loops wind threads of tangled reality into a web too bulky to slash through. At the heaviest of times, the circuit breakers trip and the fuses blow.
My mind becomes toast. Good luck reviving it.
Deep breaths, a protracted pause, and patience until the system comes back online. Then, the cycle begins again.
Such is the daily struggle of recovering from brain injury. In my case, mine was acquired in the form of autoimmune encephalitis: brain inflammation caused by my immune system attacking healthy cells in the brain. Plenty of other things—such as a stroke, seizure, tumour, oxygen deprivation and head trauma—can lead to similar cognitive spirals. While immediate medical care may halt the progression of further damage, patients are often left with a lonely and challenging aftermath to contend with.
Recovery is invisible, slow, unmapped, and uneven.
When your brain goes on the fritz
After 5 years of cognitive decline, my level of confusion and disorientation progressed to the point of hospitalization in 2019. The emergency room admitted me for having “an altered state of consciousness.” A lumbar puncture, EEG, MRI, PET scan, and numerous needle pokes later, I was diagnosed with seronegative autoimmune encephalitis.
In many respects, this side of the patient journey is actually the easy part. When you’re hospitalized with your brain on the fritz, you often lack the wherewithal to realize the extent of your cognitive issues.
Sometimes you’re left in a coma. Sometimes you’re conscious, but not actually present in the manner someone awake should be. Sometimes your memory is gone, only to be pieced together later with stories told by the people who witnessed your delicate state.
For me, the severe stages of my brain impairment shielded me from much of the suffering I would have experienced otherwise.
The beginning stages of the caregiver journey? Different story. I am incredibly thankful for my mom, who sat by my side nearly every day, functioned as my mouthpiece when I couldn’t advocate for myself, and endured the emotional anguish of seeing her daughter’s mind slip away. She’s the one who bore the brunt of my time in hospital, left on a rollercoaster of uncertainty and fear as doctors did their best to ultimately diagnose and treat me.
In any case, you’re typically afforded a level of respect and understanding from people that dissipates as time wears on. First mention of the words “hospitalization” and “brain injury” elicits the tacit knowledge that something severe has occurred, patience is warranted, and sensitivity is appreciated.
When your brain is on the mend
You’re discharged from medical care. The moment you step outside the facility, you feel like running a victory lap! But your body has other plans.
In fact, you go home, shower, and crash into bed for the rest of the day. It turns out you’re far more fatigued than you realize, and spend the next few weeks (or months) unable to gas your energy tank up to full.
I never knew how out of sync my emotions, body, and cognition could become until I dealt with brain injury. I came to learn firsthand how the wellbeing of one can exist independent of the others, leaving you with the scaled back capacity to function in the ways you could before.
It can feel like a scheduling problem, not so different from trying to coordinate a coffee date between 3 friends. Sometimes your schedules line up, and things move forward smoothly; sometimes your schedules are off, and you’re left waiting for a future that can’t come soon enough. Sometimes you go ahead with just 2 of you; sometimes schedules change unexpectedly, and you forge ahead alone.
In the early stages of recovery, my emotions, body, and cognition would hardly cooperate. I would feel like writing a message to a friend, but the words just wouldn’t come. Or my brain would let me complete some work, but before long I would need a nap. Or I would have the energy to cook, all the while judging myself for how clumsy and uncoordinated my post-injury actions had become.
“Be kind to yourself” makes sense intellectually, but that’s easier said than done. You’re thrust into a foreign reality, with a new brain that takes time to reacquaint itself with your body and emotions. And you’re likely underprepared for this adjustment. Many brain injury survivors are left without proper rehabilitation services or counselling support once they leave the hospital. It can feel like you’re left, forgotten, all alone.
At first, friends, family, and coworkers are generally kind and empathetic in the wake of your injury. But recovery takes longer than most people think. You start to realize that life goes forward for others at a pace you can’t compete with.
You soon develop a sense of alienation and isolation to work through, on top of your compromised cognitive state.
The lingering issues that persist months later
Before I get much further, I should clarify: brain injury can look different from person to person. Some people experience a full recovery in a short period of time, while others are left with permanent deficits years later.
I have an unusual case of autoimmune encephalitis that has involved multiple remissions and relapses over 6 years. Right now I’m recovering from a relapse, which has reminded me all too viscerally how devastating it is to lose your cognitive function. This post is my attempt to make sense of this time period, as well as capture the commonalities I’ve noticed between myself and other brain injury survivors. Here are some of the lingering issues that exist for those of us in recovery:
1. Your brain takes time to work itself out of the twilight zone.
It’s hard to truly conceptualize what it’s like to lose brain capacity, unless it’s happened to you. Brain fog is one thing; brain injury is another. With the latter, it feels like critical connections inside your hardware have gone missing.
Recovery is a slow process to put your hardware back together, or to learn how to compensate without it. Daily tasks require an immense amount of focus, concentration, and time to accomplish—if they’re within your reach at all. For example, the coordination required to drive and process information from road signs, changing traffic signals, and the movement of vehicles around you may take awhile to become comfortable with again. Or processes you could formerly run on autopilot—like brushing your teeth, making coffee, or getting groceries—may require a new level of concerted effort and mental energy.
Some days, the psychiatric involvement is strong. I think the following may be what some would call derealization or depersonalization. More than just a fried brain, it seems like there’s a layer of reality I’ve lost the ability to tap into.
My brain feels like a foreign place I have to reorient myself within from moment to moment. Various facets of my cognition are disjointed, such as my memory, concept of time, coordination between inner thoughts and speech production, executive functioning, and processing speed. I hold the premise internally that my body is on the mend; but that statement doesn’t jive too well with the lived experience, boots on the ground. I lose the sense for what’s actually happening inside my brain, as if somehow the existence of “me” is scattered elsewhere along a different dimension.
For now, I take comfort in knowing that these alarming neuropsychiatric elements are expected—that it’s going to be some time before I notice the ways in which my brain is recovering. But it’s hard to overstate how months of living with cognitive deficits and misperceptions of reality evokes a type of hardship that permeates into all aspects of your life. As much as I try not to dwell on these challenges, it’s sometimes overwhelming to deal with the emotional pain of losing my mind and attempting to regain it again.
2. Recovery isn’t linear, and the uncertainty is destabilizing.
I can never quite predict my level of functioning from day to day. As I alluded to in the previous point, my cognitive playground is constantly changing.
Generally, you might assume that “recovery from injury” will involve steady increases in improvement back to a baseline of good health. But this isn’t the case when it comes to the brain (and many chronic illnesses). It’s much more like a constant rollercoaster that lurches up and down, forwards and backwards, at any and all inclines. And at any range of velocities.
This means I’m constantly reorienting myself to an unfamiliar toolkit. Some days I can write 500 words before the fatigue kicks in; sometimes I spend a couple hours cobbling together 50, before needing to retire my mental efforts for the day. Some days I tidily knock off 10 items on my to-do list, while other days it’s a struggle to handle 2. This, coming from a “doer” and “go-getter,” is an especially tough pill to swallow.
The level of uncertainty that comes with brain injury recovery makes it hard to stand on your own two feet. It’s hard to schedule future plans, let alone commit to the responsibilities of school or work, when your functioning is inconsistent and unpredictable.
You’re caught in a catch-22: you want to orient your present self towards a destination; yet it’s hard to decide what that destination should be, since you have little idea of what capabilities your future self will arrive with. Maybe you’ll have the capacity to rise to the demands of the situation; maybe you won’t. In the latter case, you become prone to overextending yourself unless you learn to honour the limits of your body.
Any setback messes with your head, leaving you to question your judgement of past progress and how reliable your memory is. And with some conditions, such as autoimmune encephalitis, setbacks come with the question of whether the cause of the brain injury may be resurfacing—or if the cause was never fully resolved in the first place.
The ups and downs of brain injury recovery are destabilizing, as you never quite know how to evaluate your present state or forecast your future state.
3. You can’t relate with people in the same manner as before.
“How are you” is a simple question, yet I usually end up stumbling through the answer. There’s multiple layers to the truth here—which one is appropriate for the context at hand?
In many situations it’s easier to answer “I’m fine” than to delve into any details. Plus, it’s really more of a pleasantry than an honest question. You’re not going to tell the barista that you’re feeling frustrated trying to function with half your brain. But things get tricky when it comes to friends, family, and coworkers.
Yes, part of them wants to hear how recovery is going; but it’s also natural for them to assume a recovery quicker than how it really is, and to have plenty of other considerations on their mind. I can tell some people get bored hearing me discuss my health, and I can’t blame them: there is so much more to life beyond the strange goings-on of my brain! I’d like to be discussing (hypothetical) cool places I’ve been going, the latest thing I’ve learned, or the hobbies I’ve taken up, too. But my reality is different. It’s dominated by medical appointments, naps, and attempts to implement strategies for overcoming my cognitive deficits. The energy to diversify my interests is few and far between.
As a result, I often end up glossing over how I’m really doing, and stretching myself to have an organic interaction based on the conversational inputs from the other person.
This puts me in a weird and uncomfortable headspace. You end up reflecting on your slow pace of recovery, questioning your mental preoccupations, and overthinking the mechanics of how to relate with others. You consider “maybe if people showed genuine interest in how I’m doing, I could get the truth off my chest and cleanse my mind for discussing other topics,” then start to wonder whether you’re botching all your social interactions. Then you talk to someone whose general attitude screams “just pull yourself together already!” and suddenly remember why you’ve grown accustomed to minimizing your inner state.
Besides the emotional complications, there’s the difficulties posed by the brain deficits themselves. My verbal fluency and processing speed are heavily impacted, which makes it hard to catch the rhythm of group dynamics and figure out how to contribute to conversations. Try as I will to be present in the moment, it’s hard not to become anxious and self-conscious as I witness my brain faltering in ways that used to be reliable.
Unfulfilling social interactions can leave you with an acute feeling of grief as you’re reminded of how radically your brains have been altered. The result is a unique sense of loneliness as you fail to acknowledge your inner world to others.
Making the best of what you have today
It’s easy to feel discouraged by the invisible realities that come with brain injury. There’s a lot to contend with in the aftermath of such a devastating setback.
However, the field of neuroplasticity has taught us that the brain is a resilient organ. It can adapt to compensate for injury, restoring functionalities that were once severely impaired.
My own recoveries are a testament to what’s possible: I’ve bounced back from autoimmune encephalitis relapses several times, going from as low as 25% of my baseline level of functioning back up to 95-100%. A few months after my hospitalization last year, I became well enough to find my feet as a full-time Communications Manager, travel abroad, and build a life beyond any health limitations.
But what can you do in the meantime, while recovery feels out of reach? Frankly, this is a daily reassessment for me that I hope to cover in a future post. But for today, I have a couple quick suggestions.
If you have the mobility, get outside. Fresh air and walks in nature are good for your health, restorative for the soul, and help with getting you out of your head.
If you’re stuck inside, don’t isolate yourself further. Find an online community, if you don’t have a trusted friend or family member you feel comfortable reaching out to. Facebook groups are a wonderful outcome of the polarizing social media platform. Even if you’re not up for conversation, it’s powerful to read what others are posting and to realize you’re not alone.
WhereAreMyPillows is a seronegative AE survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap.
Your generous Donations allow IAES to continue our important work and save lives!
Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org
International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.
For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.