I've blogged about it before, but things aren't getting any better.
I can't think of a time, going as far back as my mind allows, when I didn't have some sort of a symptom related to this. When I was young, my parents and I assumed it was a pinched nerve in my arm or something. As I've gotten older, I've noticed the patterns, though. It's all getting way more frequent, and far more painful or otherwise disruptive.
The most recent symptoms are just repeats of things I've had before:
Today, It's a cramping/spasming thing, but in the weirdest way. It feels like I slammed 3 of the fingers on my left hand in a door. It's the proximal phalanx, not in any of the joints. As I'm typing this, I'm feeling it elsewhere, like in the same relative bone in my thumb. It's excruciating, and I'm just waiting for the meds (Gabapentin, Cyclobenzaprine) to do their thing.
I just want a doctor to pay attention to all of these things and understand how disruptive they are to my life and help me to identify what it actually is and how to treat/manage/cure it beyond what I've been doing.
August 1, 2008, I set foot in my first living space in the Houston area. On the west side of the city, right along Interstate 10, it was my biggest and one of the most important chapter changes in my life. Having lived in a small city in Indiana before, and a rural area prior to that, also in Indiana, I was overwhelmed by the grandeur of this new metropolitan area.
August 4th, I made my way to the downtown Houston office for the first time, nervous about working in a more corporate environment after working for small companies and startups prior. It was wild, parking in the downtown lot, taking the elevator to the second floor, and setting my stuff up in a cubicle on a side of the building that was still being set up. I recalled stepping outside the office and staring in amazement at the skyline that was close enough to touch. I even took a picture, sharing with my family and friends back home in Indiana, and feeling nervous about the future ahead.
Here I am, 16 years and a couple months later, staring at my final day in that office, surviving 2 major acquisitions/mergers, arriving at IBM after it was all said and done. Our leadership decided though that we were not going to occupy that building any longer, and that we had to be out before the end of October this year. Fortunately, though, they had organized other office spaces for us to occupy, relative to our roles within the company. Mine, and that for most of the people adjacent to me in the organization, is actually closer to where I live now, on the 5th floor of a high-rise on Houston's west side in the Westchase District.
It's bittersweet for me. I have a lot of memories, some silly, some amazing, and some frustrating at the downtown office. I got used to the area, and took great advantage of all that was nearby, including the downtown tunnel system. But on the west side, it's not as familiar to me, and we don't have the convenience of a tunnel system, of which to navigate the surrounding area subterranially. But I know it's going to be a great experience, may actually be a quicker commute, and will expose me to new people, new benefits, and there will be new memories to form there.
I'll have to find my picture I took of the downtown skyline from the downtown office, and try to replicate it tomorrow before I leave for the last time.
For the last 8 or so years, I have been dealing with a condition called aphasia. This comes and goes, and as such, it's classified as transient.
This condition presents itself in multiple ways:
These are just the most common ways I deal with it. There may be other times where it presents totally differently, though that's not happened frequently enough for me to remember off the top of my head.
For the people with whom I interact, this may appear as though I am being ignorant to what they have to say or want me to do. With my work, I do a lot of text-based communication, and in those situations I often have to request for people to rephrase what they say. If I'm having a phone call or face-to-face conversation with someone, I will hear the sounds they are emitting, but my brain fails to process them as words. This often results in me asking the other person to slowly restate whatever they had just said.
While it is frustrating for everyone else, let me tell you how frustrating it is for me. It's like someone has bound my hands, put a blindfold on me, or stuffed rubber chickens in my ears. It's like I'm trapped inside my own head, much like that episode of "House" where Mos Def played the one guy who was trapped in his own head. For me, it's not as severe as what was portrayed in the TV show, but it's quite relatable for me.
When it comes to the struggle with basic tasks, the best example I can give is a time when I got up from my desk with the intention of going to the kitchen for a snack or drink. When I got to the door, it was closed and latched, and I stood there for 5 minutes trying to figure out how to open it. It's not a complicated task by any means, and I knew that at the time. I still got very angry though, because of how limited I felt.
If you ever interact with me and I tell you that I'm dealing with this aphasia, please grant me some grace and understanding. It's far worse for me than it is for you.
I've been listening to a few of Our Lady Peace's hits from the 90's, and I've got to say, they had GREAT musical abilities back then, even with the lead singer's nasally vocals.
I've tried to listen to a few of their newer things, and it's not as good. I even caught a more modern live performance of Superman's Dead, and it SUCKED.
Seriously, if you want good sounds, check these out:
Pay attention to the musical qualities and aspects, especially on Clumsy.
Starting about 7 years ago, I got to a point where things either didn't sound right to me, or I couldn't understand them, whether an audible source (such as spoken word, music) or visual/literary source. When it first started happening, I chalked it up to just being tired, or failing to have sound around me or words in front of me. I didn't think much about it, but then it started happening more frequently, and started affecting me more dramatically. It would come on with no warning, and would never last the same length of time as previous.
I ended up talking with my doctor about it, and was sent on to see a neurologist. Thorough testing and monitoring, no serious underlying issue was found. But the condition kept happening, either robbing me of my ability to understand music, or my ability to find words, or my ability to read written words. My job, being one that required a lot of reading, writing, listening, and speaking, I started to feel as though my abilities were fleeting and I would soon find myself standing in an unemployment line. I've always been regarded as a strong author, both when it comes to things like this blog, or when it comes to writing software. I know several different programming languages and can switch between them with no struggle. I'm a musician, and enjoy being able to hear the different parts of music and even replicate it myself. And people usually rely on me as a human spellcheck. Though when a wave of this issue would hit me, at least 2 of those abilities were seemingly removed from me. There would be times that it would only last a few minutes, but would sometimes last hours or days.
Doctors looked at the makeup of my brain, the blood flow through it, and the electrical signals it would generate. I had MRI imaging done, a variant of it called MRA, and a few different types of EEG. Everything looked normal, nothing was amiss, and the doctors found nothing to remark on. The neurologist I had seen at the time determined it was just a thing that happened and there was no visible cause for it. His assessment was that it would fade over the couple of months following, then I would never deal with it again. It was then qualified as idiopathic transient aphasia, meaning "An unknown loss of ability to perform cognitive duties, lasting a short period of time, then going back to normal". Another way of saying it, "You lose these abilities for a random period of time, but we find no cause for it." As such, it's been classified as benign, having no long term, damaging effects.
I appreciate positivity and can respect doctors who think that way, but there was an air of ignorance to it. I wasn't able to get him to understand that it was a thing that had been going on for a long time. He just said that I needed to give it time and patience and it would pass.
It did subside for a few months during the great COVID-19 pandemic, but it's been coming back since then, much more frequently, lasting longer, and having more profound impacts.
One day a week or so ago, I stood up from my desk and walked towards the door, but the door was closed. I couldn't figure out how to open it. It's not a fancy or elaborate door; it has a simple doorknob that needs to be turned, then the door pulled open. I couldn't figure that out though! I was so frustrated that I just went back to sit at my desk and wait for it to pass then try again later.
Another time in the past that I can recall, I was staring at my browser window, needing to switch to a different tab, but couldn't figure out how to do it. I mean, it's as simple as point and click, or ctrl+tab, or ctrl+a number for which tab I wanted. I couldn't understand any of those though, and I was just as frustrated as I was with the door a few days ago.
Tonight, before dinner, I decided I was going to work on a specific code thing. I felt confident about it, and thought I would be able to wrap it up tonight. After dinner, I came to sit and work on it, and I couldn't figure out the first step to get started on it. That was over an hour ago. I still don't know how to get started on it. I even opened the code that I have been working on for the last couple of years, being the only author/developer of the entire complex platform, but failed to understand any of it. I couldn't (still can't as I write this) make sense of what I was looking at, what the file structure was, or how any of it worked together. I was left dumb in context of software development.
What makes no sense though is that while I might not know how to open a door, I am able to load up a flight simulation, start from cold and dark, plan and enter a flight, fuel up, taxi to the runway, take off, reach altitude, cruise, descend, enter final approach details, and land. I can still drive when it's going on. I might not be able to speak or understand someone else speaking, but I can certainly drive from A to B without any issue. In fact, if I didn't tell anyone about what I was feeling, they would never know.
I need to go over this again with my new neurologist, and I need to get more updated testing done. I'm smarter than this, I'm more able than this, and I am stronger than it is. But the symptoms keep coming around, and keep hitting different faculties, and doing nothing more than frustrating me.