Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 11-12-2020, 02:41 PM #1
guitardude guitardude is offline
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guitardude guitardude is offline
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Default 2 year update

Hi all. Extremely long post is likely to happen

Been thinking amount making an update post, and I just hit the 2 year mark. I'll start with a bit of life context...

I play music and tutor math/physics.... additionally I have struggled with health ailments ever since my teenage years. First was tinnitus around 14, and then when I was in college I had a slew of guitar and non-guitar related repetitive strain injuries. I even went through a carpal+cubital tunnel decompression when I was 19. However, it turns out that I have hypermobility/ehlers danlos underpinning all of this so treatment the past few years has been focused on stabilizing my joints and body mechanics.

Fast forward to fall 2018 - I was having a rough period where a lot of my various pinched nerve issues were acting up. Several pain, sensory, and motor issues throughout the body just had me feeling very down and I felt that I simply couldn't break the cycle, even though at this point I had learned a lot about how to maintain my musculoskeletal system.

The point is, I was very down on myself and even feeling some sense of self-loathing that I hadn't been able to correct my issues. This is when things get kind of dark... On my 23rd birthday, I had a scheduled phone call to try and get a referral to a neurologist within my HMO or whatever. I simply wanted someone who could run thorough EMG testing to see where my nerves are most affected, whereas the neurologist I had prior had been not as helpful.

The phone call consisted of another neurologist telling me 'I'm not sure if this call was scheduled on accident? You're gonna need someone else, that's not really my focus'. While that is totally reasonable, I had been trying to turn things around for a couple months at this point, and I felt so dismayed by the idea that I still was not progressing in getting this sorted out, that I went into a complete breakdown. I was throwing random stuff across the room, yelling out in anger, and eventually just went and banged my head against the wall...

I distinctly remember after the third hit, I felt some tingling into my hands at that moment (likely whiplash), and just instantly felt very out of it, malaise, nausea. It pretty much instantly registered that I had f'd up, and despite it being my birthday, the remainder of the day was... spooky. Things simply felt OFF. I had dinner with my parents, and then hung out with some buddies, but couldn't shake off the feeling that everything had a weird glaze to it and my thoughts felt so foggy.

The next few weeks, it registered what I had done to myself. I found myself consistently loosing my train of thought, and calculus problems that once were second nature were now a chore. Physically, I didn't have much in the way of headaches, but it certainly did cause a flare up in my neck's soft tissues (which are already problematic with hypermobility). My tinnitus, which had largely abated in the years prior, was now a major disturbance again. Visual snow and after images became very prominent at all times.

Now I'll never know this for sure, but after about 6 weeks I felt some improvement underway, but then had a head to head collision with my friend while dancing/moshing at a party. Smart I know, right...

This brings us to pretty much the very beginning of 2019, which would end up being a VERY hard year emotionally. Months went by, and the absence of physical concussion symptoms made my quality of life bearable thankfully (from reading on here I could see how so many had additional challenges), but the despair was setting in regarding my cognition and personhood, by extension. I continued my teaching job, and try to work on music as well, but it felt that I was 'dialing in' everything. Nothing was intuitive anymore, and If i wanted to have internal thoughts, they were now manufactured instead of organic.

Overall, 'depersonalization' is the best descriptor of my experience. I always felt to be in a dense, ethereal fog of disconnection with my surroundings. In addition, I was still dealing with the challenges of my hypermobility condition, and now I felt even less of a motivation to put the necessary work into correcting these issues. Essentially, 'why even bother doing physical therapy to make guitar playing easier: even if i can do so physically, I can't mentally conceptualize music the way I could before'.

Now, once again, I am extremely blessed in that I had a very stable living situation through all of this. I was living with my family, and had plenty of friends to kill the time with. However, I will point out that while I did open up to several people about having a TBI, this is the only time I have ever disclosed the self-inflicted nature of how it happened. There is an element of shame in my experience, and every doctor or person I told about this, I made up some BS about slipping in the shower. I hope that soon, I will feel comfortable telling the truth to my loved ones. It is truly a dark secret of mine.

The 1 year mark, my 24th birthday, was indeed a low point. The realization that after 12 months I still felt as if I had lost my very essence was very hard to grapple with, and I did not feel at all hopeful for the future. However, maybe a month or two after this, I felt the tide start to change.

Now at this point, I may as well include another personal detail for those who've made it this far. I had a romantic encounter with a long lost friend around this time, which I think contributed to a new found positivity. Now, ultimately things didnt pan out the way I had hoped, but the thrill of having someone care about me in such a way that I had not experienced in some time seemed to reactivate some synapses. This , of course, points to the deep connection with the emotional component of something like TBI recovery that cannot be overemphasized.

This essentially leads me into the start of 2020. While I was still very much experiencing the depersonalization that had been following me around, I had a glimpse of optimism and had a pretty intense couple of months lined up. Beginning of January I went to a video game/music festival to perform, and a couple weeks after I flew out to los angeles for a music convention. A few other gigs and events were interspersed among this; while it was pretty overstimulating at times, I started to feel a fervor for this sort of 'hustle' again.

February was similar, with a decent amount of performing, rehearsing, etc... but instead of feeling constantly self conscious about my broken brain, I was genuinely enjoying myself. The same with my tutoring work - this might sound ridiculous, but I did start using cannabis regularly before going into the office to reduce the anxiety/dread that had once accompanied that procedure and I started to feel once again in a flow state when teaching.

Needless to say, the pace of things changed going into March, but at this point I felt that i was getting my life back. The past few months have been very rough for many, definitely those in the music world. However, I feel as though I've got a renewed lease on my life and am once again working on improving myself musically, professionally, and intellectually. Though this would've been extremely daunting a year ago, my friend is teaching me how to program in Python and I'm having a blast expanding on the mathematical ideas that underpin it.

A week ago was my 25th birthday, and I'm glad that I stuck it through the dark times... Very glad to have been able to read the varied experiences of others on this board as well, and I hope some of you gain something out of mine.
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Old 12-06-2020, 04:37 AM #2
Atticus Atticus is offline
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Hey guitardude,

What a privilege to have read that. I wasn't familiar with your story so I read all your posts and listened to "Dodgy Boat" too in its entirety. I love it. What a thoughtful and sensitive and intelligent and eloquent and talented young man you are. I am sure you will prosper. Thanks for writing that and if you have any more music links please share.

Atty
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Old 12-07-2020, 05:40 PM #3
guitardude guitardude is offline
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guitardude guitardude is offline
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Quote:
Originally Posted by Atticus View Post
Hey guitardude,

What a privilege to have read that. I wasn't familiar with your story so I read all your posts and listened to "Dodgy Boat" too in its entirety. I love it. What a thoughtful and sensitive and intelligent and eloquent and talented young man you are. I am sure you will prosper. Thanks for writing that and if you have any more music links please share.

Atty
Atty

I saw your youtube comment but hadn't realize you found me through here! Wow, your sentiments are so kind I nearly want to tear up... I'm by no stretch a religious person, but this ordeal is the one time where it felt as if I had to make a plea to God, in the hopes of having a fervor for life and my passions once again.

It means a lot that you admire my musical creations: if you liked our cover of Dodgy Boat, be sure to check out the album 'Wardenclyffe Tower' by Allan Holdsworth which contains the original. For my ears, he is one of the most important musicians of the past century and the most exciting guitar player ever to touch the instrument. He had some very dark personal struggles of his own, but every day his incredible music inspires me to keep going.
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