My Brain and I

A quick note on my use of the F- word. In person, I am full of sayings such as oh goodness and whoopsy daisies. I had a dirty mouth in my 20’s, and it got pretty bad with the F word. So I vowed to clean it up. It wasn’t lady like enough for me, and it was unprofessional. I have no idea how I went from that to my current bag of grandmother sayings. HOWEVER. When things are really terrible, sometimes the only choice is to choose a foul word to elicit the full emotion. I’m sure there are worse words than F, but that would take energy to look up. So if you are offended, I am not sorry.

About a month after seeing the neurologists is when it really started going south. I had been seeing my physical therapist M for a few weeks. Not to be confused with my lover savior angel boyfriend M. M was still living in Vail during this time, so I was alone during the week. He came down to Denver every single weekend to visit me that spring.

My anxiety and depression was through the roof. I was still trying to hold onto my job. I felt like I had a terrible hangover every day. I could not organize my thoughts, my schedule, my day, anything. I would show up to PT crying like someone from an insane asylum.

This post is not easy to write because it was the darkest period in my entire recovery process. I was truly at rock bottom. My brain was so lost, confused, not working. I did not know what to do. I was like a 100 year old person and a baby in one. But I was lost in the middle somewhere. I hesitate to write what I am about to write, but to you other survivors out there, you are not alone. I write this for you. It does get better. I don’t write this for sympathy, I write this for connection, connections not yet made.

After much internal debate I knew I needed to ask for emotional help. I reached out to some local friends to see if they could stop by to ease my isolation. I was not well enough to leave the house to see them. Just say hello for 15 minutes I asked. …. one person did one time. Because I seemed normal to them, they could not quite understand.

I then reached out to nonlocal friends saying I needed support. I got an outpooring of replies within the day and week, it was great. Unfortunately I did not have the brain ability or energy to engage with them. After that first week it was radio silence. I know people are hesitant with uncomfortable unknown situations and don’t reach out because they don’t know how. I have been guilty of this in the past. But when you finally get up the courage to ask for help, and then it doesn’t match your expectations or you don’t receive it, you feel worse than you did before you asked for help. And in my case, this time was f u c k i n g b a d

My mental/emotional/psychological/ brain pain was so bad that I wanted my body to be physically in pain to take the other pain away. I wanted to ease my pain and have no pressure on myself. In full disclosure, I had been at this point once before. Before my brain injury. My grief from losing my best friend S to a brain aneurysm. And two months before that losing our other best friend H from complications from a brain aneurysm as well. My life post 30 had been a new life, a more difficult life. And now my post injury life was like being reborn yet again. My third life in the 36 years of my body and brain.

At this point my PT M set me up with a speech language pathologist (SLP). I can’t remember if I told her about my desire to hurt myself. She assured me the SLP would help me cope and teach me to do some basic things humans do to function. My SLP was also named S. The same name. New angel SLP S was saving me from my own brain and my grief over other S. Working with her felt like someone was helping manage my life, helping me get from wake up time to go to sleep time. I have not thanked her enough.

Miraculously, I swooped out of that darkness. That hell. Swooped right into purgatory.

I mentioned before that getting better and progressing are in teeny tiny baby steps. They are so small that no one can see them other than you and your therapist. Tedium on steroids.

I am sometimes asked about my recovery. How far I have come? How far I have to go? I envision many things in life on a number line. In this case, I don’t know what number I am starting on, and I don’t know what number is the finish line. So some progress may seem big or small but when you can’t see the whole picture, you cant make percentages or estimates about the past or the future. Madness.

Say for instance, you are kidnapped and dropped onto another planet from a spacemobile. You were blindfolded and given a sedative, so you didn’t see where they went or for how long. They drop you with no compass. Nothing. You set off on foot to try and find help, food, water, etc. You don’t know if its one mile away, 100 miles away, or 10,000 miles away. As you keep going all these miles, you try to stay optimistic. But you really have no idea where you started or where you will end. Or maybe you never find anyone.

This is like the TBI recovery. There are no mile markers. Signs to the next town. You are utterly out there without the faintest idea how far you must go.

Back to the baby steps analogy. Below is an examples of PT exercises to demonstrate the tedium. The time frames indicate how long it takes you do be able to do it without feeling sick and hitting the wall. You still still feel sick when you progress to the next stage. But you won’t hit the wall.

1. Sitting down- you read words on a card- one syllable words 1-2 weeks
2. Sitting down- you turn your head a little to the right and left while you read the same words on a card; same thing moving head up and down- 2+ weeks
3. Sitting down- same thing faster head turns. 1 week
4. Standing up facing a blank wall- turn your head while reading the same one letter word cards 2+ weeks
5. Standing up facing the room- same head turns and up and down with cards 2+ weeks
6. Walking while doing head turns and reading cards- this took me several months to get to.
7. Heal to toe- I don’t even know if we’ve done this now.
8. You start all over again with sitting down but you add a card a new words- two syllable words. OMG you had no idea 2 syllable words would be so much effing harder. Walk through steps 1-7 again. more months pass.
9. Then you add a memory component. Do all of the steps above but flip the card over and repeat the first few words from memory. More months.
10. Rotate your body in a slight circle while the cards move in that same circle. Holy shit moving your head outside its normal plane is sooo hard. You feel like total shit.

I could go on and on, but I won’t bore you. I think you get the point. I usually had to lie on the table for hours after my appointment just to feel well enough to leave. All of these sessions make you feel terrible the rest of the day.. And usually at least one day after. Sometimes more. Hello hangovers with no booze. You aren’t welcome.

No pain, no gain they tell you.

You probably remember learning about Maslow’s Hierarchy of Needs. That pyramid with some basic things at the bottom like food and shelter. Then safety and love and eventually at the tiny top self actualization, meaning creativity and the desire to be the best you can be.

Well there is a similar pyramid in brain rehabilitation. The bottom layers are energy and processing speed. Followed by concentration and attention above. And then memory and learning new things. And the top is executive functioning.

Generally healthy employed people have mastered executive functioning, though we all master to different degrees. But us TBIers take a loooong time to get all those bottom layers. If we ever master them at all.

I went to a speech language pathologist S in 2019 (the first year of my recovery) who was a lifeeeeee savor helping me with these things. She helped me when I was on the brink of total oblivion. We organized. We made schedules. She had the same name as my best friend. It felt like she swooped in from another world and put mine back together.

S and I made routines such as : 1. wake up 2. get the shower 3. put your contacts in 4. brush your teeth 5. make breakfast. It was that granular. Because my brain needed that granular.

So you might wonder, how could one hold a job? Well, one can’t really. Most of the people I have talked to with a similar condition don’t work, or only work part time. And that is a struggle. Such is my life. I have been working about 10 hours a week for the past year and few months. A lovely human convinced her team to take a chance on me. I had lost my full time job prior to that during my first year of recovery.

Mastering things like faster processing speed, memory retention and retrieval, focusing for a longer period of time- these are all like training for a marathon. Training for a marathon equals every. single. thing. in life. All progress in various types of therapy are baby steps. So tiny it’s more like a baby in the womb.

Pine nut. Walnut. Pistachio nut. Macadamia nut. Hazelnut. Peanut. ….

Naming nuts! …. Harlan Pepper and his hound dog Hubert in Best in Show. Remember?!

This is one of my therapy exercises. Pick a category and see how many things you can name. Sometime to make it extra hard you have to do with the first letter of the alphabet. ie apple, banana, cherry, d-d-d-d-d.

A couple months ago a doctor had me do this. Now in full (cannot think of the word) .. Nevermind. I had done a fair amount of visual/brain exercises prior to this exercise, so I was tired. I also had to tap each hand to that leg each time I said A- leg tap. Apple- other leg tap. B-tap leg. Banana- tap. Etc. By the time I got to letter H or so (~10 words), I had no absolutely no idea what I was doing. Not only could I not think of a word, I had zero clue what the exercise was. I could not remember. I had no idea what was going on. Short term memory gone.

Brain fatigue is a bitch. A big fat ugly slimy one. The size of this earth. 

Today I learned what a stagger headache is. I’ve had them since my injury, but I didn’t know what it was called.

Imagine you are walking down the street in NYC. All of the sudden someone bangs you in the head with a large heavy pot. You didn’t see it coming. Explosive pain in your head. You stagger trying not to fall over. But then the pain is gone quickly. No one noticed (or cared) that someone whacked you good. Did it even happen? The pain is gone, so you don’t mention to anyone around you.

This is what happens to me somewhat frequently. Except there is no bad man with a heavy pot. It’s like a lightning bolt, and I try to continue to sit still or walk normal. I usually don’t even say anything if I am with someone, because what would I say? It becomes a normal occurrence, so then you just sound like you are complaining.

These headaches are similar to some longer lasting ones I used to get. Especially when I tried to fly on an airplane with in the first year of the injury. My head was in so much pain it felt like there was a sharp knife driving into it and slicing it open. I am not exaggerating. Very scary.

And then I discovered that the expensive Bose noise cancelling headphones I bought to lessen my symptoms due to the noise of the plane were actually exacerbating the problem. Apparently my brain did not like the headband resting down upon my head with the weight of the earphones. It look months before I made this discovery.

One step forwards, 3 steps back.

Bad Bose headphones, bad.

Have you ever seen a movie where the character is going insane/ losing his mind? The volume of all of the things around him goes up really loud, and it sounds like pure chaos. A bug chirping. Rain dripping. A car whizzing by. Its all SO loud, and he can’t filter it out. I can’t think of a specific movie where this happens, but I generally feel like it exists, and I’ve seen it. So let’s go with it.

With a brain injury this is how I have felt quite often. Everything, every movement, every noise, every person is banging on your door at once. Except that door is your brain. You can’t make it stop.

Ring ring. Knock knock. I often wish I had a shirt or huge sign that says “I have a brain injury, fuck off.”

The only peace is silence. No movement. Stillness in every sense, literally and figuratively.

Every noise, bird, screen change on the TV, person walking by. You can’t choose which to filter out. They are all demanding for equal attention. Where is my get out of jail free card?

Your only choice is to put a wall up. Dig yourself deeper into your private hole. Your bubble within a bubble. Seek protection from the world. You run to your room and hide under the the covers. No noise. No movement. Only stillness and the sound of your breathing. This is your safe place.

A few of the main mTBI (mild TBI- although nothing seems mild about it)/concussion/post concussive symptoms are headaches, fatigue and nausea. Normal people understand these symptoms because they have them too. Someone who gets migraines might feel like they understand what these TBI symptoms feel like. They are terrible. The difference is a person with a TBI gets these, but combined with cognitive impairment. Ie short term memory loss, slower processing speeds, word finding difficulty (ie can’t think of basic words needed to form a sentence), inability to concentrate or focus. Sometimes we don’t even know how much these functionalities are available to us. They break down at exponential speeds with brain fatigue. And brain fatigue comes from just about everything. Literally just being alive. Hearing a loud noise, waiting a car go by. These all drain energy.

Everyone has heard “you don’t know what you have until it’s gone.” For example, you lose your umbrella. But you likely won’t notice you’ve lost it, until you need it. Until it rains again, and you can’t find it. Or more serious things, such as a spouse, friend etc.

The same is true after a brain injury. In some ways you’re still you. And then you try to read a few words on a card. And you can’t. A 5 year old could do it, you think. You know how to literally read. But the process of you brain looking at the word, determining what it is, and saying it out loud takes buttloads of energy. And after you do it a little, you might be so nauseous and headachy and tired that you have to sleep THE REST OF THE DAY. and maybe most of the next.

So inherently you know HOW to do this activity, but you must retrain your brain to do it and accept that it is not as dangerous as how you injured your brain in the first place.

Filing a document into the correct folder and subfolder on the computer. Something most of us do all the time with our jobs. I had no idea I would barely be able to do that until I tried it. It was like a 90 year old trying to do it. A little shaky, I couldn’t keep the mouse where I wanted it to go and trying to hold it down and drag to the right place took an insane amount of focus and coordination. It was so tedious, I ignored it like the plague.

I mentioned squats earlier. At the appointment, when my therapist M had me try some, I thought easy peasy here we go. After 5 I was sick and wiped. Woah nelly! What the hell I thought. I know how to do it, my legs will do it. But my brain can’t handle it.

One time PT M had a deck of cards. She told me to flip over a card, say the number out-loud, and then place the card down in 4 piles according to the suit. My goodness this is silly and easy I thought. Again nope. Brain didn’t like it. More fatigue, nausea, dizziness, headaches.

Same with driving a car, walking down a street block, remembering what was said 1 minute before, reading, being awake for more than a few hours, leaving the house, etc, etc etc etc

I didn’t want to know that I had “lost my umbrella.” Rain, rain, go away. Come again another day.

As of 4-6 weeks after the injury, I had been to the ER, primary care twice, and MRI. The only direction I was given at this point was that I could follow up with a neurologist. Minimal guidance on who, where, etc. Now unfortunately the medical community makes us jump through hoops to transfer records and trying to get in with ANY doctor within a month was almost impossible. I really didn’t have the brain capacity to find a doctor, fill out the paperwork, and get the MRI sent over, but I guess I figured it out eventually. My memory of this period is pretty vague. It is NOT very comforting to find out you have to wait so long to see a doctor when you can barely function, and no doctor has been helpful yet.

Anyways, the month passed and finally I got in to see two different neurologists. One did a basic exam, checking out memory, balance, coordination etc. However, she had little to offer besides medication that she used with other patients to treat migraines. The other doctor did almost no examination and told me if I was bad enough to see a neurologist, it would take me on average 9 months to recover.

And that was it. Bam. Nada. No other advice. No explanation of this is how the brain works or information on rehabilitation.

I felt separated from myself. Who was this brain and body I know longer had control of. If a doctor can’t help me, and doctors help humans, then maybe I am no longer human. I truly felt out of body. An alien.

I was no longer living the same life as everyone else, but I didn’t know how to explain it. You look good people say. You seem fine. I had a concussion once and I was fine within a week. These comments have continued throughout the last two years. To be honest, they are maddening. If anyone else were inside my brain, they would know it wasn’t “just a concussion.” Hence this blog.

THANK GOD, I had made an appointment with a physical therapist I had seen previously for a torn knee. My neck had been hurting, and I was hopeful she could help me save some money from the massages I had been getting. Little did I know, there was an entire concussion protocol of therapy which included physical therapy, vestibular (balance), vision, and cognitive therapy. I could not even get through the intake examination. I was so nauseous and fatigued I had to lie down for an hour before I could even leave the clinic. Less than 10 squats made me feel like I was going to throw up. This appointment took days to recover from.

And so my life of therapy had begun. I had zero idea what was in store or what had happened to me. And the scariest part was no one else seemed to know either.

First week after the accident: I went home from the hospital on a Tuesday and pretty much did not wake up until Friday. No technology for days proved to be no problem. No headaches, no nausea that I remember. Thinking I had done what I was supposed to and followed the ER doctor’s orders, I planned my return to Vail that weekend as M had friends in town visiting. I bought a Bustang ticket (I wasn’t supposed to drive) and headed to the train station. About 30 minutes outside of Denver, my head started killing in the exact spot I had landed on it. I panicked. Perhaps it was the bus vibration causing it? I knew I needed to get off the bus asap. I called M and had him pick me up in Frisco instead of at the Vail Station. Once at his apartment I felt better but was scared about what was happening. Something was off. I was also meeting his friends for the first time (reminder it was late January and M and I had met early December). I was paranoid they thought I was an overly dramatic and needy girlfriend. I felt a need to “act normal.” This need to act normal would be a constant presence in my life.

M and his friends skied the next day while I went in search of a doctor. Fortunately I found someone who could see me at a private practice. I told him I’d seen an ER doctor who said I had a basic concussion and should be fine soon, but that I was worried something was more serious. He again did an examination and confirmed what the ER doctor had said. I should feel back to normal within a few weeks. Headaches, nausea, and fatigue were nothing to be too concerned about.

I felt really “off” that weekend, but didn’t talk about it much. I felt relieved that I was going to be ok. I even went out and bought a new helmet and expensive ski boots.

The following week I had a work trip to Durango which the doctor said was ok to go on. M had agreed to drive me as I didn’t think it would be a good idea for me to drive myself. For some reason traveling by car was ok at this time, but traveling by bus was not. I was able to do some work in the hotel room but felt extremely tired all the time. When I attended the work events, I again felt off/weird/uncomfortable/messed up but felt social pressure to “act normal.” The work trip seemed to be a success, and M drove us back to Denver. 

For the next couple of weeks I would go into the office late and leave early. I was exhausted by 2 or 3 pm and went home to rest. I still felt weird but wasn’t nauseous and don’t remember having bad headaches. Little did I know I was doing way too much and pushing myself too hard. I even flew to a friend’s wedding on the east coast. 

Scroll to mid February (three weeks had elapsed), and I had another work trip, but this time with several coworkers and my boss. We had seats on a small shuttle bus, similar to the Colorado Mtn Express buses. They allowed me to sit in the front seat, but about halfway there I started to feel extremely nauseous. I was so sick and could hardly keep my eyes open. I had never felt like this before, sicker than I knew how to explain. I knew this was a bad sign. When we finally got there, I could not stand up in the hotel lobby and instead sat down in a chair and laid my head on the table while I waited for everyone to check in. I felt weak, completely exhausted and sicker then I can ever remember. I wanted (and needed) to sleep for days. We had an hour to rest before our work event. No one seemed very concerned that I felt like I was going to die- but I probably didn’t verbalize it. I slept in the hotel room briefly and set an alarm so as not to miss the event. 

I told people at the event I was sick but I struggled through my brief presentation and tried to listen to the others. I attended work events the following day before we were to get back on the bus. It was Valentines Day and almost the weekend, so M was to pick me up when the bus stopped in Silverthorne. Once again after a bit on the bus I felt terrible again. I took Dramamine which did nothing. I was able to get to his place in Avon but felt extremely sick and exhausted. 

That weekend was when it became obvious that I was really not ok. One morning I drove his friends the 10 minute drive to Vail to drop them off to ski. When I was dropping them off I started to feel really overheated. I rolled the windows down. Nausea and weirdness set in. I felt like I barely made it back to his apartment in Avon. First thing wrong- I couldn’t drive for more than 5 minutes. Upon getting home I had to sleep for the rest of the day to feel any better. The next day I attempted to walk the 50 years (typo- yards) across the parking lot from his place to the grocery store. The same thing happened. Nausea. Fatigue. The world felt like it was closing on me. Again I had to lie down/sleep for 5 to 6 hours before I could even get out of bed. Apparently I couldn’t walk more than about 20 yards. Then the third thing happened, I tried to read a book. No dice. After less than 10 minutes I was bedridden for hours. 

Cognitively, my short term memory was gone, my processing speed was down by over 50%, and I could no longer focus or organize information.

Ultimately I could not get out of bed at all other than to force a little food down here and there. I was way too sick to endure traveling back to Denver. We called the doctor in Vail I had previously seen and scheduled an MRI. Sleeping and waiting until the appointment for days.

Two Zanex down (for my claustrophobia) and the MRI results back- they were normal. Nothing was structurally wrong with my brain. But something was very wrong with me.

“Yikes I am going too fast,” I thought. My adrenaline surged as I was slightly out of control on my skis. All of the sudden there was a steep icy section. “It is too icy to turn and slow down,” I thought. I’ll have to go straight down it. Then I noticed beneath it was a hard packed, sheet of ice catwalk that curved sharply to the right. Crap, I must slow down, I thought. I attempted a small turn and caught an edge. I flew in the air backwards down the rest of the steep section. I landed at the bottom, on ice as hard as a rock, on the back of my head.

Did I lose consciousness for a second? I wasn’t sure. I laid there for who knows how long, and then finally realized I needed to move so someone didn’t slam into me. M had already rounded the corner and was out of sight. Someone stopped and asked if I was ok. I said I thought I was. I felt really weird and out of it, but I eventually got up and skied around the corner and found M.

I remember skiing the rest of the way down the mountain. Every leaf on the trees was crystal clear. I felt like I was high. I had no idea this was going to be my last ski day of the year and probably ever.

That evening I felt “off” and weird and out of it, but I did not go directly to the hospital. My body was fine. I could walk and talk and seemed relatively normal. I was so out of it I wasn’t thinking logically and didn’t know to see a doctor. 

Lying in bed that night was the most disconcerting of the day. I felt like I was floating above the bed, floating above my body. I know now that this was the moment I left my brain and my body. My brain would from now on be a separate entity and I would have to get to know this new self and new body that was not me.

The following day we drove back to M’s place in Avon. (Note: M and I had met less than 6 weeks prior to this!!) All I remember is that he was playing the music really loud in the car. I was uncomfortable. But I did not say anything to him. Putting things into words would become an all too familiar problem. The morning after I got up early to drive back to Denver and go straight to work. During this drive, I started to feel hot, really sick, panicky, and suffocated. I was terrified. Miraculously I made it back to Denver and straight to a hospital. 

The ER doctor spent about 10 minutes with me and did a quick exam. He determined that yes, I had a concussion, but that I did not have any bleeding in my brain, and therefore did not need a CT scan. He instructed me not to be on the computer, phone, watch tv, or read the rest of the week. He instructed to ease back the couple weeks afterwards. I called my office and let them know, thinking this would be a tough week with no technology.