An acquaintance recently asked my husband if he thought I was “faking” my brain injury. I thought this remark hit a bit higher on the offensive meter than the typical “she looks fine” and “I forget words sometimes too, that’s just old age.” This one digs sharply into the pit of my stomach. I don’t fault others for not understanding. Everyone has their own problems, and there’s not a lot of awareness about post-concussion syndrome and traumatic brain injury. Even my own husband, who patiently takes care of me day after day, struggles to fully grasp what it’s like. I look “normal” on the outside. I’m like a duck sitting on a pond; no one else can see my feet frantically paddling just to stay afloat.
The past year of my life has been the most challenging yet, and while I have often been treated with kindness and compassion, I have also felt very alone on my road to recovery. The other parents who see me drop my kid off at school don’t know I’m wearing ear plugs to drown out the unbearable noise; they don’t know that I can’t drive on the highway because I panic at speeds above 60 mph. My neighbors who see me walk the dogs can’t tell that I lose my “ish” whenever the leashes get twisted. Friends who saw my post of my daughter’s breakdancing performance have no idea that I spent four days in bed afterward from the over-stimulation of my brain. Even readers of my blog may not know that it takes me much longer than it should to write an article because screen time gives me headaches, and my brain now struggles with sentence structure, word recall and spelling.
So here is my attempt at describing my brain injury, what it feels like to have the universe tell you that you can’t do anything you enjoy, and what it’s like to fear you’ll never again be able rejoin the outside world. For my brain-injured readers, I hope you feel a little less alone.
My brain injury is:
Like waking up one day to find you are suddenly a complete stranger in your body. Like your brain has been taken over by a tiny gremlin who is tripping wires and setting little fires.
Forgetting day after day after day when you turn the tea kettle on. Feeling perplexed each time you try to open the tea box. Leaving your sink water running after you get distracted by something else. Spooning salsa into your coffee. The few seconds after your timer goes off and you can’t remember what you set the timer for in the first place.
Calling your daughter by your dog’s name and not being able to recall the word “dog.” Jumbled sentences and made-up words. Stuttering or repeating the first word of a sentence like a broken record because you can’t find the next word when you are tired and overwhelmed.
Never being able to finish a task all at once. Cleaning, baking, emails, bills, personal grooming: all unfinished. Every task must be done in steps because there’s never enough brain energy. No longer being able to push through the exhaustion to finish a project, or else you will have symptoms for days.
Wearing your pajamas to the doctor because you can’t be bothered to get dressed. Can’t remember the last time you flossed.
A thought unfinished, a word unsaid. A blank space where the memory should be. You go to grab it, and it’s just not there. Not remembering where you parked your car or what you did yesterday, momentarily not recognizing your surroundings, forgetting to eat. Someone reminds you of something you forgot and there’s no spark of recollection.
The sense that you are “losing your mind,” a glimpse at what it’s like to have dementia. Feeling like you are sleepwalking through each day. Can’t think, can’t reason, can’t be logical or rational.
Time contracts and expands. You lose track of time, can’t calculate hours. You struggle to figure out how to structure your day, and it feels so overwhelming when you have more than two things you must do.
Vivid dreams and restless sleep. Panic rising before your sleep medicine kicks in. Dreams of getting lost and then not being able to remember your husband’s phone number. Dreams that people confuse your brain injury for mental illness. Recurrent dreams of wild animals attacking.
Always being in fight-or-flight mode; your sympathetic nervous system is on overdrive. Prey looking out for a predator. What was that movement in your peripheral vision? Will I slip and fall on the stairs? You imagine a tragic car accident while you’re driving. An unexpected noise makes you jump out of your skin.
You can’t quiet your mind and turn off the mental chatter. You’re easily distracted, concentration is impaired, you can no longer follow conversations. The grocery store is a nightmare with all of the lights, noise and endless choices.
A black empty feeling on the really bad symptom days, like someone scribbled out your brain with a black marker. Offline, no spark, unable to process information. There’s absolutely nothing left. The world has tilted and you are slipping off the edge.
My brain injury symptoms are:
A multitude of headaches, all day, every day, sometimes in the middle of the night. Stabbing, pulsing, electrical snapping, brain squeezing. In the sinuses, across the forehead, cheekbone and the back of the skull. Migraines and headache hangovers. Anything that can give you a headache does. Your brain always feels like a pressure cooker, a helium balloon ready to pop.
Blurry vision, your eyes won’t focus at the same distance. Pain when you look up, double vision when you look down. Words float in and out of the page so you can’t read for more than a few minutes. Blinding lights with halos everywhere, you have to squint and shield your eyes even from the moon. No more driving at night, you keep the lights in the house down low.
Ringing in your ears, high-pitched screeching, sometimes a deep whistle like a train horn. A moment that you lose hearing in one ear when the whistling becomes too loud. The sound of your blood pulsing in your ear with your heart beat, you just want silence.
Sound hurts your head, gouges your brain. Your brain can’t filter out the background noise that just gets louder and louder. The sound of your toothbrush charging hurts your head, your child’s footsteps are stomping directly on your brain. You can’t hear anyone talking when the fan is on. No more music, no more public places. You wear ear plugs inside your house because you can’t handle the dogs barking or more than one person talking.
Wearing sunglasses to watch a TV show with your child, closing your eyes half the time because the movement and colors are too overwhelming. Too much movement disorients you and makes you dizzy. Bending over hurts your head and you see stars.
Bumping into walls, missing your lip when you drink. Your coordination is not the same anymore.
Mental exhaustion — the kind where you can’t form complete sentences, can’t remember what you started out to do, your eyes sting and burn, and your head feels too heavy to carry.
Too loud, too fast, too bright, too much. Stop talking, stop moving, turn off the lights, enough. All the world, just shut the f*$% up! Mornings, days, evenings in your bedroom with the door shut, eye mask on and ear plugs in. Desperately needing to block out the world until the symptoms subside. You did too much, you tried too soon. You can’t handle it, you’re not ready. It’s only been a year.
A brain injury is relentless emotional turmoil, a constant internal tug of war.
It is denial that your recovery will take that long or that you may have lingering symptoms for the rest of your life.
It is self-doubt and self-judgment. The shame of being broken and weak. You think, “I’m not smart anymore, I’m an emotional disaster, I don’t contribute anything. Why me? Why did I have to go snowboarding that day? Why didn’t I take better care of myself before this?”
A brain injury is perpetual conflicting emotions. You want to go, but you want to stay; you want to be with someone, but you want to be alone; you want to keep trying, but you want to give up. You are so tired of doing nothing yet you don’t feel like doing anything.
An everlasting feeling of inertia. The reluctance to move; you think, “Just let me lay here for another minute.” Irritation that you have to stop a task because you need to rest before the symptoms come.
So much uncontrolled anxiety, the lump in your stomach hardening into a rock, the squeezing in your throat. Heart pounding. Hands trembling.
Incessantly worrying about the bills. Not knowing if you’ll ever be able to work again. You can’t imagine being able to get through an eight-hour workday.
Fear. Gripping, intense, paralyzing fear. Always some level of underlying fear. Fear of falling, fear of a car accident, hitting your head, never getting better. Fear of leaving the house, of doing something you used to do because it might increase your symptoms. Fear this is as good as it’s going to get.
A brain injury is that flicker of irritability rising at the slightest provocation, an imprudent outburst toward your kid. Pent-up rage, frustration with your new limitations. Wanting to break something, but you don’t have the energy to clean it up. Wanting to scream or punch something but it hurts your head.
Feeling fragile, like something will easily break you. Feeling volatile, like a volcano on the verge of erupting. Unable to tolerate any stress, your meltdowns are frequent.
A brain injury is loss. Loss of your old self, your life expectations, your career, your goals and your hobbies. Loss of your freedom and independence.
It is inconsolable grief. Endless tears. Hopelessness and despair. Sometimes going to bed at night and wishing you wouldn’t wake up in the morning.
A brain injury is altered relationships, isolation and lost social skills.
It is the never-ending guilt of being a burden on your family, for causing them pain, for requiring sacrifices, for scaring them on the days you can no longer “hold it together.”
Your husband becomes your caretaker, you become his patient. You are fragile and dependent. You are no longer the lioness; your kid worries about you and wants to protect you. They dutifully run your errands; they rightfully lose their patience. Everyone is on edge.
A brain injury is missing your daughter when she’s away, only to find you are too exhausted to be around her when she gets home, and you shamefully count the minutes until her bedtime.
It is feeling disconnected from your family. They often leave you behind because they have to. They want to be with you, but they want the “old” you. You can no longer do the things you used to do to bond with them. You can’t go on date nights or anniversary trips with your husband. You can’t read to your daughter, and you miss her dance performances, play dates and doctors’ appointments.
You wonder if you’ll ever be able to take your daughter on a girls trip or to see a movie. Anticipate that you will never see another concert. Realize you will never go skiing, sledding or ice skating with your kid again.
No more fun. No more wine with dinner, no Friday night beers. No restaurants, family gatherings or parties. No reading books, no watching TV. No more dancing, yoga, music or theater.
A brain injury is isolation from the world; you’ve become a recluse. You leave the house because you are going stir-crazy, only to feel buds of panic rise as you want to immediately return home.
Friends no longer invite you to hang out. They don’t even check on you anymore. It’s long past the time when they think you should have fully recovered. You miss being social but think, “What’s the point?” It’s too much stimulation anyway. Your brain injury is like a bad ex: you can’t talk about anything else, and they don’t want to hear it anymore.
You discover a newfound social awkwardness. You can’t follow conversations because you get distracted by your symptoms or an unfamiliar word or an external stimulus. You can’t maintain eye contact anymore. You no longer have a prefrontal filter; you laugh when you shouldn’t, you swear when it’s inappropriate and you interrupt. You’ve become self-conscious and have social anxiety. You are inflexible; a last minute change in plans feels catastrophic, a cancellation devastating.
A brain injury is profound loneliness you’ve never before experienced. No one can really understand what you are going through. You desperately want to be acknowledged, heard, understood — even when you “don’t make sense.”
A brain injury is exhausting efforts at trying to recover when there’s no protocol to follow, no guarantee of healing.
Recovery happens in waves, sharp dips and long plateaus. Progress is measured in years. You may never fully recover.
A brain injury is appointment after appointment. Neurologist, chiropractor, craniosacral therapist, acupuncturist, naturopath, hyperbaric oxygen clinic, trauma counselor, vision therapist, nutritionist. You don’t have the energy to go to any of them.
Infrared light therapy, vestibular therapy, vision therapy homework, dry needling, meditation, brain exercises to stimulate neuroplasticity. Special glasses with eye lights, bone-conducting headphones, eye charts taped on the walls around the house. The different parts of your brain like an orchestra that’s out of tune.
Medications and supplements, pills and powders, sprays and injections. Gagging on healthy brain foods. Anything to heal. Desperate to tame.
Rest, rest; always more rest. Hour after hour of laying in silence. You are bored. Your body betrays your brain when it needs to rest. You resist. When your eyelids refuse to stay shut, you stare at the ceiling, listening to the tick of the clock and the hum of the furnace. Time stands still and then suddenly slips away.
A brain injury is transformation, a time of deep reflection and a new beginning.
A constant struggle to keep going. To not sink. To choose life after brain injury.
It is allowing yourself the time and space and rest you need to heal.
Countless hours spent contemplating your purpose and what crucial life changes you should make.
It is relinquishing control. Letting go of behaviors that didn’t actually serve you, and slowing down so you can pay attention to what really matters.
Cultivating gratitude and counting your blessings. Practicing self-compassion and self-acceptance. Forgiving your mistakes, pardoning your past. Finding a glimmer of humor beneath the dark shadows.
A brain injury is celebrating the smallest of victories. Finding your strength and becoming a warrior. An upheaval of your whole life, and then you climb off the edge and pave a new path.
It is waking up one day and realizing you are no longer a stranger in your life.
Follow this journey on Better Brained.