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.

Oh, It’s Just an Excuse

Lately, it feels like every time I decline an invitation, or say I can’t do something (which by the way it KILLS me to say I can’t do something), or complain about not being able to go somewhere because of the heat, I’m being judged.

Not an excuse

I have even heard people chat about me when they didn’t know I was nearby or in hearing range, say that I’m just using my MS as an excuse. Think of this as a follow up to my article, Last Minute RSVP.

An excuse… let that sink in, I mean really sink in. They’re insinuating that the incurable disease that I suffer from on a daily basis I’m using as an excuse.

I would be honest

Now, the people that state these kinds of things don’t really know me, because they would know better than that. If I don’t want to do something or go somewhere, I’m just not going to go. I will tell you that I just don’t want to go, flat out. I know that most people respectfully decline a lot of things, but sometimes I’m just a bit too blunt, and my filter doesn’t work.
These people that make these comments aren’t even worthy of a response from me because they don’t matter in my life if they are going to be rude and disrespectful. But I have all of these people that also have MS that reach out to share with me things that happen to them and IT’S NOT OKAY.

WHAT YOU DON'T SEE

“You don’t look sick” is a phrase that I think everyone fighting a battle with Multiple Sclerosis has heard at least once in their life.  Discussing how MS is an “invisible illness” is a common talking point among those who suffer from the disease.

I don’t look sick but I am suffering

Many use a cane, walker, or wheelchair, however, just as many do not, leaving few, if any, recognizable symptoms for those with untrained eyes.  In a world where people seem to only believe what they see (at least when it comes to illnesses), our struggle is often minimized or overlooked. I’ll be the first to admit, I don’t look sick, not one bit, but that doesn’t mean I’m not suffering.

If you could see it, would you understand my struggle?

I may look like you, but that doesn’t mean I am. I wish people could, for one day, see what they normally can’t. I wish they could see my struggles, just once. I wish just once they could glance below the facade I put up and see what they don’t often see.  Not for sympathy, but for understanding. Seeing what they don’t normally see might better explain some of my actions. Since they can’t, I thought I’d inform them of what they don’t see.