I have a unique perspective. I’m sure others have had experience like mine, but not many. Other constant pain sufferers will relate to this piece.
A pain syndrome that doesn’t relent can be caused by many things, but each person’s experience is as unique as a fingerprint. That makes it hard to gather a bunch of us up in the same basket to define and treat. Not only are the chronic pain sufferers back-seated in their lives, but the people around them, at least in my experience, mostly don’t want to hear about it. There’s nothing they can do about it, so, it’s frustrating to them to hear about it. I understand. If you look up ‘chronic pain,’ you’ll find treatments like ‘breathing.’ and yoga, both helpful, but in the low single digits of percentile.
I have, in twenty-seven years, accomplished some level of recovery. I am still in pain, but I managed to overcome one chunk of it with a little-known procedure 15 years ago. I discovered unknown things about it 3 years ago that have helped, and a month ago, I achieved success in identifiying a prescripton medicine, non-opioid, that drastically had improved my condition. I am still adjusting to that wonderful thing. It took a bout with cancer to learn this.
Had this medication been prescribed 15 years ago, my story today would be different.
Even after relief of the single, worst symptom, I was still in significant pain, and my self-confidence had been destroyed. I didnt’ know it until some years later when it became clear to me. I can remember more freshly, in more detail, how this bleeding of self-confidence happened, so perhaps writing about it with be cathargic. Perhaps writing about it will give someone else a little knowledge they can use to preserve their own.
A persons self-confidence can be boosted and built, it can be bashed and destroyed. I was brimming with self-confidence for all of the 38 years before my life was changed by two accidents, a bad fall, and then a subsequent, seemingly-simple accident. I just always expected it to be there. It was well built, starting with my parents. My mother and father both contributed to my self-confidence. My Mom signed us up for things, my Dad took me to play golf. I play music thanks to Both. She’s not a musician, he was, both were a big supporters of their kids efforts at anything. I almost made Eagle scout (that’s another story).
All the way through school, doing chorus and broadway musicals where I played leading roles, superior ratings at vocal and choral competitions. Joining the Navy, sailing around half the world, Sailor of the quarter once. I put together a dive club, got a bunch of guys certified and on the next cruise, I put together a band that would play a number of foriegn cities. Everywhere I went, I had confidence that I could pull off just about anything into the above-average cloud. I excelled in that, and in my career as a softeware developer.
After the severe disability began, my focus became survival.
Nobody could see the intense level of the pain No one could see the particulars of the condition. I tried to describe it so they could understand, but the reactions I got we’re unhelpful. Folks just really didn’t want to hear about it. They didnt’ say so. They’d listen and then go on to whatever they were doing. This wasn’t intentional, they just couldnt offer anything and, I guess no one realized how a person in long-term chronic pain sometimes just wants someone to listen. Especially when the doctors don’t. I hated talking about it, but it comes out.
So, the first three years and three months, i didn’t sleep a full night. It wasn’t until a doctor my wife worked for, based on her credibility since they couldn’t find anything on images, started prescribing opioids. I could finally sleep for 6 hours. My self-confidence had been bashed by then to some level, but I didn’t have a clue.
The next nine years, opioid therapy was what kept me able to overcome the pain to enjoy half a life. I was and am, generally, an upbeat person from the moment I wake up. Still, the remaining pain was a struggle through almost every activity. It made intense activity really difficult, and sometimes you need to maitain intense activity. I would sometimes get mad and slam doors. Not being mad at anybody, just mad at such pain. That wasn’t good for my marriage
Damage to relationships
During that time, I really reached out to my wife for confidence. That really isn’t what she does. She faked it for awhile. She tried hard, for awhile. Over years, I became less and less self confident, and I can remember reaching a point where I was following her around, like a puppy, sometimes, but being ignored. Then there was Roger who befriended her, that was really difficult. She would laugh and drink and party with Roger, and not talk to me. That was really damaging when I look back.
I remember on a trip to see her daughter in Ohio just feeling like she hated me. Like I was following her around hoping for a nice word. One day she would cut me down, the next day feel a little bad about it and treat me nice, and that was a pattern for years she probably wouldn’t acknowldge. She might not have seen it. That was my perspective. She likely won’t read this.
That period included a couple melt-downs on my part, one publicly at a big party. It was humiliating. It’s still humiliating to think about. I had no control. I felt like a 1 inch tall man. Tiny. All I could think about was how to get back in her good graces. I didn’t think anyone would ever do anyting directly about my pain and the source of it. For years, i just accepted this as my life.
First Relief
In 2006, after 12 years and 7 weeks of pain so intense it robbed sleep, only covered up by morphine, I experienced lasting relief. The worst pain, the never-ending pain that I called “The Biker’s Boot” was lifted off of me, so far, 15 years, never to return. I still believe it could so I’m careful not to fall again, especially from a 2nd floor. That was accomplished by the very physical process of NeuroCranial Restrucuting over 4 days in Miami. There are other posts about it.
Before that, I had laid on the couch for 2 years, watching the Iraq war to distract me from the pain. I didn’t know that being flat also reduced my pain, because there were two sources of pain interacting. It would be another 12 years before I understood that and why. During that time, my family continued their lives around me, but I did’t participate much. The first ten years of stuggling to work and be normal against the pain led to that 2-year period I call ‘the collapse.’ It happened becuase I just couldn’t hold my head up to work anymore. For those two years I just avoided the pain.
I finally convinced my doctor to up my dose of morphine. I suddenly sprang back up from the couch and told everybody ‘I’m back,’ but there wasn’t much of me left. I was even tinier. I was still in a lot of pain that forced me to lie down. I was a wallflower now. If I went anywhere with anyone I would just sit there and not even join the conversation. I was just beat down. No one cold see the pain. No one could see how much it had been relieved. No one understood, including me, how much work remained to attain any kind of normal life again. I need 12 years to recover.
Recovering, at least partially
I have written about this journey in many places of this log, but not about my perspective on self-confidence, I still retained some in the areas of singing and computer programming, thought the programming had been shut off for years and I could no longer do it, I still felt that I was a programmer. I knew I was a singer. I had self-confidence in that. So, my son and I started attending a regular Wednesday night open mic at the close by Mandalay Grill.
I had been essentially de-socialized by those two years on the couch, and the ten years of pain preceeding it. When I played the open mic, the crowd reaction was so empowering to me. No one can understand that. No one could see the level to which I’d been repressed, but it didn’t matter. I felt like a normal person there, especially after playing and soaking in that energy. Over four years, I built enough confidence to offer myself for paid gigs. Then followed a fairly good ten year career as a local starving musicain, playing covers. I was picked up and raised up by the local music community and my musical self-confidence is still pretty good.
It was in music that i first recognized how trepedatious a self-confidence issue can be.
I can’t remember what particular gig it was, but there was a gig I prepared for and anticipated, Something happened in that I was cancelled or it was cancelled. I just dont’ remember. What I do remember about the incident was that I pumped my self-confidence up for this gig, and when it didn’t happen, I felt the self-confidence crash and re-felt how I had felt in those melt-downs. It really taught me that my new level of self-confidence was a fraction of that i carried before the accident, and it was fragile. I spend these years of pain “faking it until making it.” I still had a couple melt-downs to go.
Those are my two montra’s : “fake it til you make it.” and “rise like the phoenix.”
A Big Improvement, hopes for rebuilding
As you know if you’ve read any of my recent posts. A presecription medicine, gabapentin, at a higher than usual level has just almost eliminated the nerve pain portion of my pain syndrome giving me a lot more upright time. I still suffer from CSF Leak symptoms, but they are more manageable with knowledge. I have been recovering for a month from the pain levels i carried for the last 27 years. I dont’ feel normal, but I feel ‘almost normal’ which is a pretty nice place to be. It’s ironic that treatment for cancer in the larynx opened my eyes to the level of pain control given by 9 gabapentin pills a day. It’s wonderful and I’m still adusting. I have new hope.
There has been so much damage in my life as a result of 27 years of pain that I can’t even see how to recover, all I can do is take one step at a time. Over the past two years, I’ve regained a lot of up-to-date programming capability even as my music has waned due to the pandemic, and then cancer, so I am still fighting. I hope to change the direction of my ship in 2022. I booked a gig for February 18th, I still have to recover and strengthen my voice, which is altered.
The particulars of my pain, very specific, are still relatively unknown to any other person. They all have their own version of the story, but I doubt it matches mine.
If someone in your life suffers from a chronic issue, pain or whatever, please realize that youthful self-confidence is at risk. Don’t blame the patient. Listen. A person in constant pain needs someone to listen and understand their symptoms. I would love it if someone understood my specifics enough to cite them back to me.
That’s not gonna happen, but ‘que sera.’ I hope this piece helps someone.
Brains & Music 