My journey beyond the physical pain
Immediately after the car accident, I felt different. I felt cold, had the shivers, felt angry and light headed, as my new’ish car had just been hit … figured I was in shock. Also thought maybe my blood sugar was low since it was lunchtime. I know my body got jostled around more than any rear end collision in my past. I texted my department head and my wife, letting them know I was in a car accident but “okay.” Then, for the first time, I called 911 versus the non-emergency number for a fender bender. I didn’t feel right. My neck already hurt and my body felt tight. My head was in a fog. I would not have been able to drive safely at that immediate time. I was on auto-pilot from this point on. I needed to go through the accident reporting process with law enforcement, get checked out by the EMTs, drive home, eat some food and get checked out by my chiropractor.
The head fog was concerning me. I kept being told it would dissipate over time. It felt like the fogginess you get when you have a head cold and don’t “feel right.” It’s a tiresome feeling, a mental numbness. I knew I should have processed the information of what occurred by now. I got rear ended; the car can get fixed; it was the other guys fault; it should be a clear cut process. Inconvenient, but things will fall back into place. So what’s wrong with my cognitive state? Something isn’t right.
It’s taken 20 months to capture my observations from the waiting period where I was being told not to worry about it, to seeking online support groups and eventual reengagement with medical staff to address my cognitive and emotional states. I need to know what is permanent and what I can improve/repair. Will I ever feel 100% about myself? What will I need to accept as the “new” me?
From the beginning, I categorized my medical needs into three groups: pain management, cognitive repair, and emotional control.
In 2018, I dealt with pain. I plateaued with physical therapies and therefor take medicine to manage pain. This included OTC meds, prescription meds, and recommended meds. Eventually, settled on medical cannabis. I tested approximately 20 different strains from about five different dispensaries. Over time, I learned which ones worked best for me. Those became my core pain management drugs. One did well for cognitive, another one helped manage irritability, and the third managed all of the pain in my body. It hid the wrist pain, neck pain, and back pain. I would not drive on the strain for pain. It caused drowsiness.
In 2019, I reengaged my neurology team to discuss next steps for my cognitive and emotional concerns, as it had been over one year and the symptoms were still strong. I had learned to survive with them. A lot was avoidance. I’d avoid people, places and things that caused me to become symptomatic. Some days were bad. Some days I knew I was hurting those around me by snapping at them or failing them by not meeting their expectations. I had to have a plan for either fixing or managing the symptoms because I was only scraping by. I was not the person I wanted to be. My neurology care was being transferred out to another team. A neuropsych evaluation was the likely next step. I began a deep dive of research on “mTBI.”
I found several groups online whose members had an mTBI or was a caregiver for mTBI sufferers. It was so helpful to read about folks who have symptoms that were identical, similar or even different than mine. The stories themselves helped me relax some. I no longer felt alone. I no longer felt crazy. I was able to see what was working for people and what was not. It varied greatly. A saw a poll taken, and the most common helpful action sufferers took was “lifestyle change.” I understood that option. I had made changes, too. Therapies were also listed, many not covered by insurance. Some were interesting and creative ways to lessen the suffering. Some, I could do myself. Some would take medical engagement. The biggest help to date was no longer feeling alone. Alone in my head, trying to fix my thoughts, trying to strengthen my drive to act, trying to understand things that were causing me confusion, trying to hear, see, and process things like I knew I should be able to. I just couldn’t. It sucked. It made me sad. It made me depressed. It embarrassed me. It frustrated me. I understood why suicide was a route some chose to take. It is an isolating feeling. It’s invisible from the outside. On the inside, it’s chaos. To make it worse, the chaos didn’t even flow in a consistent way. I know that sounds weird, like it’s mutually exclusive. But, in my experience, even when my mind was “spinning out of control” or “overloaded” or “chaotic,” there was always an overarching sense of control, like the chaos was within a boundary of understanding and acceptance, where you knew thoughts were crazy, but it was within some accepted framing in your mind.
So, instead of telling people my head is still in a fog, I can break it down better, clearer, more concise phrasing. Support groups helps and brain injury web pages helped. It helped me develop the vocabulary to describe what’s going on, besides “fog.”
Here is a list of cognitive symptoms I experience:
– Slowed processing speed
– Slowed decision making
– Increased distractibility
– Decreased multitasking ability
– Decreased spatial awareness
– Disrupted mapping/navigation
– Motion sensitivity / Balance
– Disrupted inner dialog
Here is a list of emotional symptoms I experience:
+ Increased compassion
+ Strengthened empathy
Here is a way to visually understand how I perceive my thought patterns:
– Max Headroom style thoughts
– When multiple singers sing a song with different verses simultaneously
– As if there is someone steadily yelling in my ear when I’m trying to think
– As if there is an air horn periodically blown while trying to think … thoughts get cut off
– Thoughts just stop, becoming fragmented, deemed meaningless, presumably discarded
I’m motivated to get back to normal. Financially, we’re suffering because of this. Physical therapy has helped with balance / motion sensitivity. I still have room to improve.
Next up is a neuropsych eval in October. I may also go to a eye specialist to get a sense if my eyes and brain are working together effectively.
I’ve made personal goals to read and write each day. Mornings are best for that. I get drained by the afternoon. Writing my thoughts like this has helped processing my experience. I also hope that it is exercising and restrengthening my brain some. Who knows. Writing is easier than speaking. While it’s always been that way for me, like the other symptoms, it just worsened. I pause more when speaking, getting lost in what I was saying or not being able to think of the words I want to use. Once I’m stuck, the other symptoms swoop in and make it worse. I get frustrated, embarrassed and I judge myself negatively for not being able to come up with words as quickly when I speak. Writing is just easier. The words flow. Guess those brain bits are still working nicely, thankfully. I’ll take what I can get.
My goal is to crank out a few hundred to a couple thousand words per day. For those counting, we’re at 1280 words as of now. It took two sessions to complete this. I wrote the first 2/3 in the first session.
I’ve also introduced faster paced music while reading and writing. The first few days, I could handle it for a little while, but then it became a distraction, so I put it back on Relaxation / Spa music. Today, I have the 80’s goin’, and it has been fine. No distractions at all. Any pauses in writing have been natural, expected pauses. Time to crank out more words!