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:
- I could struggle to process sound, that is, make any sense of it
- I could struggle to comprehend written/typed words
- I could struggle to comprehend spoken words
- I could struggle to perform certain "basic" tasks
- I could struggle to get words out of my mouth (or fingers, if I'm typing)
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.
For the last few years I've been dealing with what my neurologist has called Cramp Fascination Syndrome in the left side of my body. Starting earlier than that, I have been dealing with Idiopathic Transient Aphasia. All my life, I have also dealt with what I can best describe as panic attacks.
I've been able to manage until recently. There would be times of more degraded ability, but for the most part it was a thing that came and went. I'd bounce back and be able to live as normal. But this past weekend I have started to notice something: My left arm has really lost muscle tone and strength, particularly in my forearm. I noticed it first when I was driving. If I had only my left hand on the wheel as I came to a stop, either a stop sign or a red light, as the forces of inertia kept me moving forward while the vehicle stopped, that arm would not be able to resist the mild forces and would begin to shake and ache like crazy.
It became more apparent at an event we took Jr to, where I helped operate a small rope bridge exercise for the boys for a bit. All I really did was grab the two upper ropes and pull them together and downward for the smaller boys to be able to reach them. But in doing this, the shaking and aches would reappear, but only in the left arm.
Yeah, I'm right-handed, and my right side is more toned than my left, but I have always been seen as the strongest person around and have had almost no issue with any task handed to me. The disparity between my arms wasn't enough to limit me or cause concern until now.
I'm not medically trained in any way beyond basic first aid, so my own self-diagnosis is not likely anywhere within accurate. But with that in mind, most doctors are surprised at how much I know and how close I can get to a diagnosis on my own. Because of that, I have been able to identify two possible conditions that account for all of this:
First, there's Multiple Sclerosis. I have had several tests to determine if that's what it is, and the doctors who have done the test have said "no, this isn't MS." But yet, the more I have read about it, and having one doctor suggest it might be MS, I am thinking that it's not been excluded from a possibility. In all that I have read, I've learned that there's no specific shaped hole that the person has to fit through for it to be quantified as MS; it's a complex disease and has a lot of variability between people who have it.
Second, there's Spinal Muscular Atrophy, or SMA. This is much more serious than MS, but can be managed to live a full life. I am less convinced that this is what it is though, as there aren't enough connections between my symptoms and it.
And finally, there's Amyotrophic Lateral Sclerosis, or ALS, or Lou Gehrig's Disease. this is the most concerning but also seems to be coming more into view as a likely thing. Some of the symptoms include muscle atrophy and problems swallowing. I definitely have muscle atrophy in my left arm and hand, and it's been quantified by my neurologist. But this increase in atrophy has me more concerned. As far as the swallowing issues, I have always dealt with a random choking sensation when I try to swallow my saliva. It doesn't usually last very long, but it does happen frequently.
I'm pretty freaked out at the possibility of it being ALS or SMA, but I can probably manage if it is MS. The more I've read about MS anyhow, I've come to think it's probably the same as Jed Bartlett's MS, relapsing/remitting, given that I have periods of feeling perfectly normal and healthy, punctuated by periods of pain and struggle around all my symptoms.
I'll try to keep this updated with the most current description of what's going on and what doctors think it is as I learn more.