On January 20, 2019 I hit my head in a ski accident. The helmet I was wearing saved my life. The resulting traumatic brain injury (TBI) has impacted every facet of my life. One of the most difficult parts of brain injuries is the isolation and feeling that the world does not understand you. A concussive generally loses the ability to effectively communicate and share thoughts and feelings. I have never blogged before (and have always disliked writing!), but in an effort to feel more understood, track my progress, and connect with other TBI survivors, here goes. There is so much to tell and share, over time I will piece together my journey.
A traumatic brain injury creates an energy crisis in the brain. Everything you do takes so much more energy than a normal person, leaving you depleted on a daily basis. A regular person might have 12 or so good hours in a day where they can get things accomplished; a person with a TBI has on average 4 hours. A good example of this is the life I am living today, at this very moment.
Today I woke up at 10 am. Yes 10 am, I still often sleep 12 hours per night. After showering and having breakfast, I had a check in call with a doctor at 11 am. I then took my dog Garfunkel to the park to play in the snow. At the park, I ran around a little bit and conversed with a couple other dog parents. I then returned home and went to my desk to attempt some work. I was so completely exhausted I had to get back in bed. I rested for about an hour, and then got up to get something to eat. Back to the computer I decided, try again. Again before I was able to do anything besides browse the windows I had open, my stomach felt really sick and I was too tired to do anything. Back to bed again.
It is now around 2 pm. I have been up for 4 hours, attempted work twice, and rested for one of those four hours.
Today would be considered worst than most days these days, but not atypical by any means.I am so fatigued today because I had a physical therapy appointment yesterday and spent a lot of time on the phone yesterday, as it was my 36th birthday. And no there was no crazy partying, a half of glass of wine at home and in bed around 10 pm. Events from one day carry over into fatigue, nausea, and headaches the following day, days, or weeks. There is no fighting through these symptoms; if you attempt to do so, the “hangover” will last more hours or days.
I have improved dramatically over the last two years, but still have a long way to go. Clearly. I am shell of my former self, but sometimes recently I have felt glimpses of the “old Emily.” So let’s start by cheering the wins. I can drive a car, could not in 2019. I can watch a movie or tv show without getting sick. I can be more physically active, going on easy hikes and walks. I can read again. I can work 10-15 hours per week.
I have many goals that most people take for granted.. enjoy dinner at a restaurant without feeling overly stimulated and needing to get out of there, attend a concert, go to a movie, travel on the weekend and be able to do activities and keep up. For TBI survivors, Covid has been a bit of a respite, the rest of the world has to live at our pace. We don’t feel pressure to keep up. But the scary part is, I have not attempted so many things in a long time so I don’t know if I have regressed or improved relative to those activities. My concussion feels like a waiting game. Only time will tell what I am able to do and when.
To all of you survivors and caregivers out there, you are not alone. I owe the biggest thank you to my boyfriend M who has lived this nightmare with me, being my chauffeur, my chef, my errand runner, and most of all the most loving, snuggly supportive partner I could have ever hoped for. I love you with all of my heart.
As my new favorite doctor recently said at the end of our call, “catch you later.”
The Accident and Diagnosis:
“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.
First Few Weeks post Accident:
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.
Month 2 Post Accident:
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.
Month 3 Post Injury: To Hell & Back
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.
…TO BE CONTINUED