Monday, September 24, 2018

My Cognitive Collapse

Glimpses. Occasionally, I see glimpses of the mind I once had, when things seem to be clicking again. These moments are reminders of a time (since passed) when my cognitive abilities were great enough to power me through advanced schooling and to excel at high levels of a technical career. I was extremely lucky to have the abilities that I had. Now, after years of battling with cognitive dysfunction because of Multiple Sclerosis, I only have rare moments when my brain feels like it’s hitting on all cylinders. Many people will talk about moments of “cog fog”, but it’s more than mere moments for me. While I do have times where my mind is foggier than normal, I also am very aware that it is almost never as sharp as it once was, except for those infrequent moments of crystal clarity that seem to come out of nowhere. Of the many symptoms I’ve experienced because of MS, my cognitive problems are the ones that trouble me the most.

It took time

I didn’t experience cognitive issues right away. It took about ten years with the disease for them to show up. Eventually, I had enough exacerbations that somewhere along the line, just the right areas of my brain were impacted. Even then, it wasn’t until my last really big exacerbation that I started having some exceptional difficulty. Those issues began taking their toll and started affecting my work. My cognitive problems are partially to blame for forcing me on to disability. Turns out that having your brain functioning properly is pretty important to being a software engineer. A career that I thought would be fine for MS, because I never knew that some of these cognitive problems were even a possibility with this disease. Not expecting these symptoms made their sudden onset incredibly disturbing to me. Did I actually have Alzheimer’s or some other condition? My doctor at the time (one of many, many I’ve had over the years) explained to me that these were legitimate symptoms of Multiple Sclerosis.

It’s more than fog

So what happens? Well, the term “fog” really is a good one. I feel “foggy” in my head a lot. It’s a hard thing to try to explain. I have many moments when I’m not thinking clearly or logically. I’m maybe able to recognize this a bit more easily than some, because my career was heavily focused on logic. I also LOVED logic puzzles and games, and I was good at them. These days it’s rare that I can pick up one of my puzzle books and get the right answer. It happens, but it’s unpredictable. I also, almost overnight, started experiencing trouble doing math (another key part of my career). I started forgetting thingstoo, a lot of things. Not only stuff I had learned throughout my life, but also short term items. I’d also forget things that I knew and used everyday. There were several times where I, for the life of me, couldn’t even remember my roommate’s name. This is a person who I knew for a decade and whose name I used multiple times a day. I would look at her and no matter how hard I tried, I couldn’t get her name. Similar issues, like remembering my bank card pin number (which hasn’t changed in nearly 20 years) began to plague me.
Attention and the way it affected my memory became a problem as well. Getting interrupted often means completely losing my place. It also means forgetting what I’m doing. A commercial will come on and I’ll then forget what I was watching or what was happening in it. This became a huge issue when trying to drive and was one reason I had to give that upI went from someone who excelled at multitasking to being someone who, at times, can’t even have another sound in the background when trying to work the microwave without forgetting how to use it.

It’s different

When I say I forget something or can’t figure something out, like many MS symptoms, I often hear a lot of “oh, I forget a lot now too”. One of the big reasons I try to write about cognitive issues so much is that’s it’s not the same. It’s not simply being absent-minded, it’s not just getting older. There is a legitimate change and deficiency that’s been measured in me. So when someone says the old, “me too” and they don’t have MS, it feels dismissive and extremely frustrating. I also talk about cognitive symptoms a lot, because they are relatively new when it comes to recognized symptoms. Even today, some doctors aren’t up to speed on the latest research and that it is in fact a recognized symptom of Multiple Sclerosis. So getting the word out and advocating for others who suffer from these symptoms is very important to me.

It’s terrifying

I also talk about these issues, because for me, they are the scariest of my problems. I’ve woken up and been unable to walk, been left with blurry visionso bad that I can’t see at times, I suffer from severe fatigue and heat intolerance, and I encounter a lot of searing, burning pain throughout my body, all because of MS. Having the disease alter the way I think, essentially, altering who I am, is absolutely terrifying to me. It’s my most despised symptom, and the one that’s altered my life the most. It’s something I need to share with others, because I need to know other people understand, and I need them to know that I understand as well.

Thanks for reading!

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