My Brain and I

Most of my posts are written about the past, they are reflective, written when I am in an introverted phase of time. They don’t often describe the state of current affairs. Because I still feel like I have a lot of explaining to do about the past. Because in turn that explains why I am the way I am today. I’ve written all these posts, but I still don’t feel like I’ve done it justice. And maybe this writing will help others who are still back in that place, who can’t communicate well and feel alone. I am extremely lucky to have resources and a loving family & partner, I know most with brain injury and chronic illness are not so lucky. The first time I discovered another person’s blog on brain injury, it was revolutionary for me. I hope this does the same.

Years ago, I did not have the language ability or perspective to write the way I do now. When I go to that dark reflective place, I still have raw emotions, intense emotions. My sense of time blurs. Sense of time in general with chronic illness blurs without career or other life milestones. But on a daily basis I don’t feel all of these raw emotions. That would be impossible. I focus on the present moment. It’s too overwhelming to think about the big stuff all the time. I (we) would drown.

Luckily it’s not as hard to stay focused on the present as much as you would think. My brain still isn’t great at multitasking. When I am doing something, it requires 100% of my brain power. So I am forced into mindfulness in a way. Thank god I don’t have to choose. It’s one way my brain has saved me. It’s protecting itself. Recovery is far from linear, but each year I do more and more and the quality of my life improves. The worst is over.

Annie Liontas’ new book Sex with a Brain Injury arrived coincidentally on January 20. You can listen to her on January 9 episode of NPR’s Fresh Air. Some quotes so far…

-“A head injury will take a lot from you. Loud music, perfume, storms, sprinting, pride, but what it takes from your partner is unbearable.”

-“During this time, I hide a lot from my wife, much of my pain.”

-“Back then I must have been especially hard to come home to. Most days she would walk through the door and I’d be in bed, the blue scarf wrapped around my head to keep out the light. No TV, no drinks at a bar, no strolls through the city holding hands. I was too weak for any of that. It was years like this, me in sickness, her in doubt. I remember a fight over a tea bag. I remember days of being jealous of the sick cat. After a decade and a half, we had never really had the opportunity to truly disappoint one another. Now my head injuries had turned us into strangers, me wondering who had roamed into the house, she thinking the house empty until she turned on the lights. It baffled her, why I was not getting better. There was nothing I could say to erase that look on her face. We had become suspect to one another, opposites of who we were when we fell in love, my strength turned into weakness, her kindness into quiet.”

-“Pain, language- the things that make us most human are too often what alienate us, keep us apart.”

-“There is having to explain the failures of your body to those closest to you over and over again, even when you know they won’t understand.”

-“Disability, whatever our gross assumptions and beliefs about it, carries legitimacy, whereas chronic illness, especially when it cannot be seen, raises flags.”

-“Somebody in my family says, ‘Jeez, you act like such an old person now.’ ”

-“Doubt hangs perpetually in the space between belief and disbelief.”

-“Are you sure this isn’t in your head?”

-“My love … I want to be understood.”

-“I begin to doubt all connections, as one does in periods of isolation. I doubt the point of my work, my place in the world- how necessary it is- my own resilience.”

-“The injured self, wanting to be heard, emerges in all kinds of ways. Sometimes temper tantrum, sometimes dirge, sometimes raw memoir, noise from a window, lyricism.”

-“The single gift of these voices in your head- doctor, family, wife- all saying the same thing, is that a little light goes on. You’ve never trusted yourself before, but now, stranded in the interstitial, you’re the one you listen to.”

-“In their living room.. I watched Parker fuss over his new baby… But for the moment I was inside unintelligible, muffled words, somehow both close and far off… I struggled to find any words at all. I fought to hang on to her story of the birth, to appear normal.. My body was vibrating of weakness.. I kept my coat on to hide how much I was sweating… In those days, lying was the binding that kept me from falling apart.. Even now, I do not wonder at the need to lie to these kind friends, good people who would have happily let me rest in a quiet, dark room.”

Thank you, Annie, for putting yourself out there.

Today is the anniversary of my accident. Five years. That’s right FIVE. I don’t have anything incredibly moving or visionary to say, although I thought this date deserved a post. I am still trying to figure out life as a sick person, how to navigate each day, how to navigate my relationships, my emotions, and my desires.

As with many brain injured, I have suffered from an inability to communicate effectively for many years. I did not have the energy to speak up about anything. Sharing my opinion would only take up energy and make me feel sick. So the easiest thing was to keep my mouth shut. I lived purely in survival mode for years. Additionally when you feel bad all the time, you don’t always want to talk about it. So you lie, say you feel fine sometimes. Every day you must do things when you feel bad. So when asked how you are doing, why would you tell the truth? You can’t never do anything, never try to do anything. Sometimes you want to do things when you feel sick and others you don’t. But you certainly can’t explain all this every time. To this day, I still have a limited, finite and very less than average amount of energy. To this day, it’s still sometimes easier not to speak the truth. You learn to go with the flow. Survive. However, this is the lesson of the boy who cried wolf. We all know that communication and trust go hand in hand. If I speak the truth now, who will believe me?

I often think of the past, and I certainly dream in the past, of my life before, when I knew who I was. My identity was defined by what I did on a daily basis, who I spent time with, conversations I had, activities I was passionate about, nonprofits I gave my time to, and certainly not least my career which I gave time and energy. When we think about who we are, usually those are the things that come to mind, how we spend our time. After a catastrophic accident with brain damage, life is defined by looking for answers, trying to find doctors who can help, doing therapies, trying to survive. Life revolves around appointments, conserving energy and trying to take care of ones health. Who am I now? What am I beyond a patient? What is my purpose? At this point, I don’t even know what I want my life to look like if I were healthy. What what I do for work? What would I be passionate about? Do I still care about the things I used to care about? The things I used to love, I am still mostly unable to do (or only in tiny doses). So your brain is like a blank slate, and while I thought about this years ago, how should I fill this plate very intentionally, I am still wondering those things, and haven’t started to fill my plate.

I usually think of my body as quite weak, unable to do the things normal people do in a day. Often being confined to the house, a place of quiet and still with the least amount of stimulation. However, a little over one year ago, I was diagnosed with Lyme disease, and so I have to think of it in the opposite way. I am actually incredibly strong and resilient. Not only has my brain been having to work harder than a healthy person, but on a cellular level my body is in fucking war every minute and every second of the day, fighting off bacteria fuckers that invade all of your systems and your brain and can cause breakdowns in a whole host of of basic bodily functions. So while my immune system is weak, and I can easily get sick, and my white blood cell count is extremely low, my immune system is fighting for its life every god damn day. And my body is working really fucking hard. So actually I am strong. I am a warrior. And I get out of bed every day.

Chronic illness requires the navigation of the fine line of accepting one’s new life and things are different vs remaining hopeful that there is a better future ahead and that recovery is possible. I’ve been doing this for five years, and I still don’t have it figured out. How to plan when health is unpredictable day to day. How to plan with and for those around you. I’ve been labeled as a hypochondriac, been told  by doctors I would never get better, and even those closest around me have not believed I would get better (and some couldn’t tell that there was anything wrong!) So while there are many negative feelings around the fact that’s it’s been five years, taking me from age 33 to almost 39, I must give myself a pat on the back (or one million) for waking up every day- not giving up. Continuing to look for answers and doctors and science that would help me get better, even if I was the only one doing it and the only one who believed it. This was not easy, it was torturous. I don’t know how to put into words. I have don’t how I did it. Harder than any fucking thing else. I am no super human, if I can do it you can. I have retrained my brain, I am getting better, and so can you.

I leave you all you survivors with this note: Don’t forget brain plasticity is real. It’s slow and painful, but it’s real. Prove everyone wrong. FIGHT.

To you caregivers out there: your work is even harder. You have a choice. You don’t get enough credit. I don’t know how you do it either.

I recently read the book The Invisible Kingdom by Meghan O’Rourke. I read it in 24 hours, could not put it down. Meghan weaves her personal struggle of chronic illness with information on our healthcare system, medicine, science, etc. With every page I could not help thinking how much her own struggles chronicled by own. Plus she had written the book on chronic illness that I want to one day write on brain injury.

Fatigue, brain fog, exhaustion, physical pain, and digestive problems throughout our twenties and thirties.  Intense itching, night sweats, constipation, memory problems, insomnia, electric shocks in legs. Check, check, check, same with me. “You are tired a lot for someone so young,” we were both told. I went to doctors who told me to drink me to drink more water, and other people dismissed me as an hypochondriac. Western medicine was simply not adequate to problem solve our list of symptoms. When Meghan finally went to an integrative doctor, she found out she had Epstein-Barre virus (chronic “mono”nucleus), thyroid problems, MTHFR mutation (disabling the body from methylating folate), inflammation, too much of the bacterium Candida albicans- check, check, check, check. Me too.

Grief came and went, but was always present. Along with anxiety and depression from our chronic health problems. Was our mental and emotional decline causing further physical decline? Or was it simply the opposite. We both wanted kids, but knew our bodies were prioritizing survival. We both tried lots of incredibly restrictive diets and did a lot of research on our own health. Endless doctors visits, bloodwork, tests. It felt like she wrote the book for me.

Despite learning various new truths about our bodies via integrative medicine, our symptoms did not all go away for good.  “At the time I knew only that I was a somewhat anxious young woman with largely invisible and hard-to-measure symptoms that came and went and affected different parts of my body.” – Meghan

I recognized I had had a lot of health problems before my TBI, but because I internalized them and rarely discussed with anyone, in some ways I “pretended” to live a normal life despite all of these issues. Maybe if I pretended they weren’t that bad, then I was basically healthy. Reading all of the diagnoses on my medical paperwork would say otherwise. Reading this book made me realize that yes, I had been living in an invisible kingdom, with invisible illness for over 10 years. Only to be followed by a further invisible injury, launched deeper into the underground abyss of isolation and loneliness.

Chronic illness is similar to TBI struggles in that there is no obvious solution, most doctors cannot help. Primary care, ER, and neurologists had completed failed me in my first couple years of recovery, some even saying if I wasn’t better by a certain date, I would not continue to improve. This is simply not true. The brain is plastic, malleable, able to change, create new neural pathways. Searching for a clinician or doctor who could help was like finding a needle in a haystack.

Ultimately, Meghan discovered she had a tick-born illness called Bartonella (in the Lyme family). I immediately booked an appointment with a specialist. Turns out I have Lyme too.

Thank you, Meghan, thank you. Thank you for writing your book so at least we know we are all in the invisible kingdom together. PS do you want to be my friend?

Have you ever been scuba diving? I have not. BUT I know the basics. Don’t run out of oxygen! But also don’t go too deep. Stay calm so you don’t use too much oxygen at once. Plan when you must get back to the surface. You have a finite amount of oxygen and you must use it sparingly to last the longest. Imagine if you had to live under water 24/7 with this limitation.

A brain injury is the same except we have a finite amount of energy (vs oxygen) each day. Every single little teeny tiny thing draws from that energy. And each day is linked to every other day. If we use too much energy one day, it draws from the energy we have available to use the following day (or days). Unless you are in a dark room with no noise, no movement, no stimulation. And even then your brain is probably thinking so you are consuming energy. I sit on the couch, but I don’t necessarily turn the TV on because that is something my brain has to process, the movement, the light, the noise, the activity, the plot, the emotions. I have less energy than a healthy person, so I have to pick and choose what I can and cannot do in a day. If you let your tank get to zero, then you gotta go back to the boat.

For example, I need to go to the pharmacy, an appointment, have two work calls, walk the dog at least twice, pay some bills, brush my teeth, remember to take my meds, don’t burn down the house. yada yada. Well every single one of those requires in the moment me seeing if I have enough energy to do that task and will that interrupt the next thing on the list. Sometimes I have to cancel something at say 1 pm, because the 4 pm is more important and I just literally cannot do both- not enough oxygen- no choice! And when your tank is almost empty you feel like the worst hangover of your life, or as M says, just tell them a brain injury is like diarrhea. Sometimes you can’t see it coming and its a fucking stinky mess.

If home is where your dark room is with stillness and quiet, then you never want to go too far from home incase you didn’t plan your oxygen tank well and you run out early. Its like a rubber band, stay within the safe zone. Don’t do too many things in a row. Always know how far away from the surface.

For TBI (or Lyme), fatigue is like scuba. You can’t push through your lack of oxygen. You only have one tank and it does not replenish itself.

Do I ever want to try scuba diving you might wonder? I live under water. Every. Single. Day.

When you think of the everyday life of a pro athlete, what do you think of? Working really hard. Waking up early. Working out a lot. Practice practice practice. Prioritizing your body and health. Focus on nutrition. Getting plenty of sleep. Everything dedicated to their body performing at its best. What do you think they think and talk about mostly during the day? Things related to their fitness, health, performance. Why? Because that is almost their entire life.

Surprisingly, a brain injury has a lot of similarities. Brain injury survivors must prioritize their health, go to bed early, be on a routine, making decisions based on health, practicing our cognitive, visual, vestibular, and physical exercise and homework. Literally every single decision revolves around the brain injury and what your body and brain can or cannot handle.

So basically, I’m Tom Brady except I don’t get paid tens of millions of dollars, I’m not famous, and I have no SuperBowl wins. Congrats to me.

Social events after a brain injury are exhausting, challenging, complicated (dare I say miserable). For me personally, my social anxiety has gone through the roof. I am hyper self conscious and cannot get out of my head. Therefore, I always prefer one on one to being in a group- and I used to be quite social before my injury.

In groups it has been really difficult for me to talk at the right time. I can’t flow in and out of the conversation. I have to really think about when to say something, and I can’t figure out how to say things at the right time. This either leads to not talking at all, or talking too much when not appropriate. Usually I feel like an outsider viewing the group and conversation from above or some separate place. I am now an observer- not ever a participant.

I don’t plan to copy Instagram posts in all of my blog posts, but one more is very relevant to this topic, and easier on my brain than thinking up original content! And so another nod to the incredible community of those with brain injuries supporting each other on social media.

Thank you @concussionrescue for providing these points of advice for navigating social functions:

1. “Try to find a quiet spot away from the noise and movement.
2. Set an alarm on your phone for the time you think you can handle. Say 30 minutes. When your alarm goes off, go home or go hide away somewhere quiet for a while
3. If you can’t leave, make sure to take a break at least every half hour, if only for a couple minutes.
4. Take someone with you who knows your symptoms well. They can step in and get you out of there before bad TBI you kicks in.
5. Monitor yourself for heavy fatigue. Once fatigue sets in, then your filter falls away and TBI truthbombs can start dropping.
6. If you’re in doubt, don’t say it. Social conversations require lots of focus and awareness. This can get burnt up pretty quick if you’re tired.
7. Be careful with humor. How it sounded in your head can be very different from how it comes out with a brain injury
8. Try to think in advance about standard answers to the usual questions people ask.
9. Don’t be too hard on yourself. There are going to be embarrassing fuckups. The amount of times I’ve rambled on when someone asks a simple question or I’ve said something abrupt and interrupted the flow of conversation. Just accept its part of the healing process.

Earlier this year I discovered that there are endless numbers of people with brain injuries who post on Instagram about their recovery. It serves a couple of main purposes: educating those around them about brain injuries and what they are going through & connecting with other TBIers who are going through something similar. Many times someone posts something, and I think wow that explains exactly what I could not seem to put into words.

Recently a post by @brainstormforbraininjury really spoke to me, especially the part in bold about what is difficult after injury:

“Here’s the thing when you look at someone who just can’t seem to get it together or that life is constantly a struggle, that’s not a typical life. Sure, people can make bad choices that have far-reaching consequences, but most people don’t choose that over and over. If you see someone who just barely keeps their head above water, there may be something going on like a brain injury. Most of the time there is no tell-tale sign that someone lives with a brain injury, but it will complicate their lives in every way.

“Planning, organizing, remembering, getting started, following through, speaking, relating, coordinating, sleeping, regulating, anticipating, these are all things that a healthy brain does automatically. For the brain injured, all of these things are harder. It can make every aspect of life impossible.

“Its not laziness, rudeness, obstinacy, or anything else so next time you see someone on thise type of journey, offer a hand up. Help out. Offer words of encouragement. Be patient. Advocate. Donate money to a brain injury cause and definitely protect your head.”

I’m still here. It’s been over six months since I’ve written. All of the previous content on the website and blog was written in two sessions, as opposed to daily blog posts. It took so much energy despite the fact that the content felt like it was exploding out of my brain. I remember sweating and shaking for hours in a row while writing.

At the rec center there is an indoor pool area with a gigantic bucket up high that slowly fills with water. Eventually once it gets full, it toppels over upside down dumping out all of the water in one full sweep, and the kids beneath it squeal in delight. This feels like my writing. I wait and wait and store up all of these thoughts that eventually are ready to be released, except no one is squealing in delight when I’m done.

I will continue my story where I left off, summer 2019, at some point. For now I am waiting for my bucket to fill back up.

Memory is a complicated construct. How we form memories, store them, and how we recall and access them. Short term vs long term. And what I think about a lot is the difference between remembering something and knowing that it happened.

I believe that my memory pre the accident is still intact. I know that my short term memory post the accident has been dramatically affected. What I am still unsure of is how I am forming longer term memories post the accident.

The terminology in one ear and out the other has a new meaning for me. We all know that sometimes when a speaker is talking, the listener isn’t really listening. They are doing something else, but nodding or acting like they are listening. And then your mother says, what did I say? And you have no idea. Because you weren’t really listening. You weren’t paying attention.

On the other hand, I can be actively listening but then directly forget what was said. One day M was about to go for a run and asked me to keep my phone with me. It was a high allergy day (which really affects him), so he wanted me to have my phone incase I needed to pick him up in the car. Cue important health reason- Emily pay attention. Less than two minutes after he walked out the door, I was walking out the door to take Garfunkel for a walk. I looked at my phone debating whether I needed to take it with me. How I remember this I don’t know! I remember thinking hmm I really don’t need to be taking my phone on all of my walks, no reason for it. I don’t need to be so attached, I’ll just leave it here. LESS THAN TWO MIN after he asked me to carry it with me! Memory gone!

The memory gets formed in my brain. And if you ask me about it later, I will remember what was said. BUT nothing prompts the memory to come forward and say hello!! Emily! Take your phone!!!

Another example. I have a call at 2 pm. I am leave the house at 1:30 pm for a walk. I think to myself, ok I will go for a short one and come back in 20-25 min in time for the call. Maybe I even set an alarm on my phone for 1:50 pm. Now I’m out walking, la la la la la. Oh the trees are nice. Blah blah blah. Bam my alarm goes off. That is weird I think, no need for an alarm while I’m walking. No idea what it was for. Walk walk walk. I arrive home at 2:20 pm. La la la. I make something to eat. Wow this kitchen is dirty, let me clean it. Etc etc.

…. I forgot about my 2 pm call, the 1:50 pm alarm did no good. I have no idea I forgot the call until I go to call my mom and see the missed call at 2 pm. OMG I think. TOTALLY FORGOT.

Everyone forgets stuff. People often say, I’m forgetful too, when I say my memory is bad. But this feels different.

Longer term when I look back over the last couple of years, it feels a little like a blur. But isn’t that true for normal people too? I know certain things occurred during certain months, so I can piece a timeline together. But do I generally remember say fall 2019? Not really. There are no large events to form an anchor that other smaller events can attach onto.

I didn’t know how bad my long ish term memory was until this past Christmas. I could not remember if M had spent xmas with my family or his the year before. Like the actual Christmas day opening presents. I had no idea. I know he was with me during the trip, but I don’t know if he was there on xmas day and when he flew to see his family. But it didn’t even show up in my realm of consciousness as a problem until one year after the event, aka the next Christmas. You don’t know what you’re missing until it’s not there.

During the first 6 months after my accident I knew my memory was bad, so I repeated things in my head over and over and over about my experience. Like a crazy person. I knew one day I would want to tell people what happened to me, and I didn’t want to forget it all. I FINALLY wrote down some of it late summer 2019. On and and off since that time, I have taken notes about my experience. When I reread these notes, it’s hard to tell what I remember vs what the notes tell my brain happened, and I confuse that with a memory of it. One day I will use those notes to help me write some posts, and everyone will think my memory is amazing.