Karen’s Story

The Full Story

On November 16, 2019 I was in an indoor sand volleyball tournament.  I went backwards for a ball and fell.  My back broke the fall but my head hit just after.  I went to the ER the next day and they said I had a concussion and I should take it easy and take Tylenol if I had a headache.  By Wednesday, November 20th I was actually feeling worse and was taken to the ER again.  I had a  CT scan done and they said that everything looked normal but diagnosed me with Post Concussion Syndrome (PCS).  Basically, my concussion was not healing the way a ‘normal’ concussion should.  

As the days and weeks went by I got progressively worse – losing my ability to function in the outside world or even in my home.  I have a Traumatic Brain Injury (TBI).  My processing time, reaction time and balance continue to improve slowly. I never go anywhere without my “tool kit” noise canceling headphones, a baseball hat, indoor glasses, sunglasses and play doh in order to block out stimulation from the outside world.  My cognitive function is impaired which prevents me from being able to concentrate, think, learn and communicate for long periods of time.  I had to start from scratch with re-learning how to function as a human being.  At one point I was incapable of simple tasks such as talking, walking, sitting in a car, cooking, emptying the dishwasher, laundry, watching TV or checking email.  It was too exhausting for my brain to handle.  With this type of injury, there is no timetable for when I will be 100% again although all my doctors say I will fully recover but none of them can tell me when, which I find frustrating. 

On December 3rd, I started to twitch in my arms, back and torso.  There would be times where I would just twitch uncontrollably for minutes on end.  The twitching also affected my speech as to where I could not really communicate by talking.  I was sent home from Physical Therapy on December 9th because I could not stop twitching and they were afraid I was trying to have a seizure.  I went back to the ER hoping to be seen by a neurologist.  (I had an appointment with a neurologist, but it was not for a few more weeks) Two neurologists came down to the ER to check on me and after they did their tests and asked me some questions they said they would come back.  When they did come back twelve of them showed up.  I am not exaggerating.  I had to be sedated so that I could be still for the MRI they wanted me to have.  It came back negative and I was not trying to have a seizure but none of them could explain the reason for the twitching or my struggle with speech.  They did not know what do do with me so they just sent me home. I eventually was diagnosed with Functional Neurological Disorder (FND). People who suffer from a TBI can sometimes develop FND. This diagnoses came from my neurologist (not the ER neurologist).

Through some experiments and dumb luck we stumbled upon a weighted vest.  I found that if I wore this weighted vest that my twitching would be less and I was able to talk pretty normal.  I started with seventeen pounds in the vest but am currently only wearing nine pounds now.  

In February, I struggled to walk. I knew I knew how to walk and did it the day before, but one day my legs would not move forward. My mom had to literally drag me through the doctor’s office to get me into my appointment. It was not that I did not want to go but could not get my brain to get my legs to walk. This walking struggle only lasted a month, but it was a long month.

My goal is to get better every day.  On my bad days I am reminded that the injury is still very real and I am still trying to process it all.  Most days it feels like I will be like this forever as I forget what it is like to feel and function as my old self.  Then I look back at my journal (I journal now) and see how far I have come.  When I am out and about the movements/people/different things going on still overwhelms/ overstimulates me and I am done.  Sometimes I can recover and calm myself down in a few minutes of removing myself from that environment but other times it takes me several hours to calm myself down.  I have to be very mindful of the amount of energy in my batteries and what I spend it on.  I have to pick and choose.  If I know I have some family event I have to go to on the weekend, I might spend Thursday and Friday just resting and charging my energy ‘batteries’ to prepare for it and it might take me until Wednesday the following week to recover from that outing.  I have missed a lot of get togethers over the past few months too, just because I knew I would not be able to handle it. 

On bad days I sometimes get stuck.  Stuck like I cannot move or I cannot move one of my legs.  It is a very strange feeling wanting to move but not being able to.  I was once stuck in my bed in the morning for over two hours.  When I finally became unstuck it took me another forty minutes to go from my room to the kitchen.  I have had to call my mom and ask her to explain to me how to make a PB & J sandwich.  When I call and ask people to help me with simple tasks, I get so frustrated at myself because I know I know how to do these things or I did them the day before just fine without any help.  Somedays I get confused about events or things that have happened in my life from the past.  My memory is very spotty.  

I am sensitive to sound and jump when I hear loud noises.  I have become textile sensitive to textures or touching most things with my left hand.  I have insomnia (but I take medication that helps).  I have a constant ringing in my ears that progressively gets louder as the day goes on.  I have a terrible concept of time.  I know how to tell time, but struggle with how long tasks will take me to complete.  I have no appetite.  I have not been hungry for months.  I have to force myself to eat, food still tastes good though.  Sometimes I forget to eat and I have lost between ten and fifteen pounds.  Making a decision is almost impossible for me now.  I have my friend text or call me in the morning asking her to help me decide if I should shower first or eat breakfast first.  She has been great at making small task lists for me to complete in order.  I can follow directions pretty well but sometimes if a list becomes too long I become overwhelmed and cannot do any of the items because I need to calm myself down.  

Besides visiting my doctors, in order to keep myself busy I have been doing a lot of crossword puzzles (I hate them) to get my eyes moving, I have been reading (though it takes me a long time to finish a chapter), doing therapy ‘homework’ and recently I have been able to handle some movies (but they cannot have bright flashing lights or loud explosions).  I get tired more easily from doing what were once simple tasks or chores around the house.  I have to remind myself daily that when I do get tired I have to Recognize (my eyes get heavy, I have more trouble concentrating, I get a headache, blurry vision or face pressure), Remove (stop the activity), Rest and Recover.  

I see a total of nine doctors/ therapists who are all trying to help me get back to the life I once knew.  The doctors/ therapists I see are Concussion Dr, Physical Therapist, Neuro Optometrist, Vision Therapist, Occupational Therapist, Neurologist, Psycho Neurologist, Psychologist and a Psychiatrist. 

I have come so far in my recovery.  I can now look at a computer screen for about an hour.  At first I was only able to handle a computer for six minutes before getting a headache.  While everything takes me longer to compete, I am making progress.  It has taken me a few days to get all this written down. 

I am not allowed to drive or be left alone for long periods of time.  I am so lucky that I have a wonderful support team around me.  My parents, step-parents, aunts/ uncles, cousins, my sister, boyfriend and friends have been great at driving me to appointments, going shopping for me, cooking me meals, spending the night at my house or letting me spend the night at their homes and being so supportive of my recovery.

I started to drive again nine months after my injury. At first my sister would take me to the park and we would practice driving. I felt like a sixteen-year-old again. I was nervous and forgot how much you have to be aware of when you drive. After driving for over fifteen years, you forget or take for granted that driving is just what you do to go places.

I went back to work ten months later. I am a teacher and wrote this letter to my principal four weeks into the school year:

She was very receptive and rearranged my schedule so that I could better handle the transition of going back to work. It was hard still going to therapy twice a week after work. I would leave most days with a headache. It was not fun knowing you were going to end the workday with a headache.

Part of my injury is that I have developed social anxiety.  I hate it.  Anxiety is stupid.  Being afraid of things or people that cannot harm me or are not even scary to begin with.  When I walk through the halls, I pray that I will not run into another person.  If I do, my anxiety flairs up.  It is dumb and frustrating because everyone at school is so nice and not scary.  I am not the person I once was.  I am shy and introverted.  It has been an adjustment. 

I am so fortunate that my friend/ co-worker lives a mile away from me. He has so graciously been driving me to work every day this school year. While my work stamina was ever so slow to return, there is no way I could have then driven myself home after work.

In June, after school was out, I was accepted to go to ‘concussion camp’. Thats what I called it. It was out in Provo, Utah and it was called Cognitive FX. The doctors and therapists are miracle workers. It was hard work and not much fun as I went to therapy every day for a week from eight to five. The CFX program is designated for each individual patient and their goal is to re-wire the brain using un-invasive therapies. Before camp started, I had to go to CFX and get a Functional MRI (fMRI). The best way I can describe it is that while you are in this fMRI, you are looking at a computer screen and have a controller in your hands. While the MRI is gathering its images, you are answering questions on the computer screen. Through thousands of scans, the doctors know where and how much blood flow each area of the brain should have while doing each individual test. The doctors can then write the therapy programs that can help each induvial patient with their brain re-wring needs.

I really did not do anything different at CFX that I was not already doing at my multiple therapies at home. What CFX did was combine many of the therapies and overstimulate me in a controlled environment. I cannot say enough good things about CFX. They made me, me again. When I left camp, my brain was between 90-95% back to pre TBI. I might not ever get that last five to ten percent back but that is ok.

It has been a little over two years now and just like everyone else, I have good and bad days. My bad days might be a little more extreme then most people but I continue to make progress and push through. Sometimes when I get run down I only need an hour nap and I am ready to go again. Loud sounds still bother me as do strobe lights and LED Christmas lights. Maybe those things will bother me forever? Only time will tell. I still go to vision therapy and it is possible I might have to continue that for the rest of my life. I now only have to check in with my concussion doctor once a year and I still see my phycologist and psychiatrist every three to four months. Who knows, maybe one day I will not need my psychiatrist anymore. I do believe that everyone should have a psychologist/ therapist they talk too. It is just good mental health practice.  

While my story is not over and not every TBI gets this bad, there are many others who are still suffering and still have not found the right help. I am here to tell you that there is HELP and there is HOPE that you will get better.