Updated 10/7/2019 – Can you imagine not being able to sit down in a straight-backed chair without it causing pain for 25 years? I only found out WHY a year ago. I did learn to sit and suffer quietly for one must sometimes, sit. My pain and the treatment for it wiped out my 40’s. I don’t remember them very well at all. I was 38 and then suddenly, I was 50. Looking back, it was more horrible than I realized, for I had to just suffer through it. No one could see it. It can drive you crazy. I’m better now, not completely, still suffering but man, have I got a story to tell.
For decades, I knew what I had as Intractable, Non-Cancerous Pain and earlier as just Chronic Pain. It was worse for the first decade or so, and I beat it partially thanks to the support of one person, but still, it didn’t have a name. Since the beginning, it would get worse in a straight backed chair, or while standing or sitting and leaning forward. In that position, my pain would spike beyond my ability to describe, A little over a year ago, I discovered the likely cause of it. I now understand more of it’s insidious nature. I now know that I’m not alone, others suffer from the same condition. The exact way each person is affected is as different as a fingerprint. My own historical journey is very unique, even with this community of rare condition sufferers.
I’m very disorganized, part of the brain fog I guess, for I try to overcome it and only partly succeed on a daily basis. It feels like my backlog is always getting bigger, but I hope to craft this Blog into a digestible version of the story of my ordeal and my recovery. As a politician once said; “I have a very good brain”, but in my case, I’m intelligent, but, it’s a bit beat down in some specific areas that I would like to address, intelligently. Can’t find any medical resources that recognize this uniqueness of my plight. 10/
PREVIOUS VERSION (Mostly written before I knew of CSF Leaks, I’m in the process of editing it out)
Hi, and welcome. Me, I am mostly a positive, happy, optimistic person. However, I live with pain and brain injury symptoms every second of the day. I go to sleep with it and I wake up to it, I’m still happy to be alive every day. I push through it to accomplish all I do, but it’s exhausting to do so and I end up accomplishing considerably less than my potential on any given day. It tries to interfere in everything do. It’s a struggle that’s been going on for a quarter of a century, as of this writing. People can still say “You look fine.” and never know.
Though it’s been almost 25 years as of early 2019, the first 12 years (and 7 weeks) were much more extremely painful. I didn’t sleep without medication and I didn’t have medication for the first 3 years and some months. That first period caused a complete collapse of the life I’d built to that point. It forcefully generated severe decline in my life.
In 2006, a simple, little-known naturopathic procedure relieved the worst of it by removing the single most debilitating symptom. Other severe pain symptoms remain**, but it’s a survivable level, I guess. After that treatment, a recovery of sorts began and still continues. Since I still have a great deal of constant, chronic pain, having a normal life has been a constant struggle. However, I have experienced quite a physical recovery after that 2006 and 2007 relief from NeuroCranial Restructuring. I had to recover socially after that, I had gotten, psychologically, to a point where I wouldn’t go places alone. My social and psychological recovery has been powered by a love for playing music. Each of these facts has a long story behind it, thus this blog.
[** Note: Since this was written, the likely cause of my ‘other severe pain symptoms’ is better understood, at least unofficially as noted below, and I know that correction is possible, however that’s a reach for right now. It’s so little understood and I’ve no resources, few even know what I deal with. I do know, only for about a year, the likely reason if not the specific location. There are other posts on CSF Leaks on my site. I’ve left much of this page alone since I was far from this potential diagnosis when I began this blog.]
Welcome to a formative blog. I began “Brains and Music” many years ago, but it sat dormant for a long time. I want to offer to the ether, my story of a recovery from a brain injury/chronic pain disabled guy into a professional, or at least semi-professional brain-injured musician. I want to add hard-earned knowledge from the perspective of one who’s had to endure a constant, intense and invisible struggle, a wrestling match with no break or recess all along. I want to find more answers to things I’m still unraveling about the experience.
After effects of suffering a head injury like mine leaves thinking a bit chaotic, and so this blog may, from time-to-time reflect that. For that reason, I’d love to find an editor or co-author to collaborate on helping to make sense of it all. This past year, I found new information, long after this page was written, and so am in the process of updating this log to reflect those details and how they apply to me. See the CSF Leak Foundation infographic.
Chronic Pain and Brain Injuries are both perplexingly invisible to those around us and little understood. I certainly tire of trying to tell the story. I’d rather simply refer someone here, to my timeline and these posts and web pages. It’s a work in process, and you may encounter a rant or two though I will try to edit those out, maybe.
My brief timeline describes how the ordeal unfolded. I’ll be posting observations, reflections, maybe even recommendations after a time. Thank you for reading.