Am I Still Me With These Cognitive Problems?

The other day, I was looking at my Kindle and paging through a list of books I’ve read in the past year. A few things dawned on me. My first thought was that it takes me so much longer than it once did to read. The other, maybe more troubling, thought that crossed my mind was that there were several books that I remember nothing about the contents. I vaguely remember reading them, but I remember nothing about the details.

That is a pretty horrifying feeling, to realize that your memory can’t be trusted like that. It makes me wonder if I am even me anymore. If I can’t recall things I’ve experienced, what does that say about my life?

It wasn’t always this way

I didn’t always have cognitive issues. In my early years with MS, I remained pretty sharp and even held a very technical job that involved using my brain. After about 10-15 years with the disease, that began to change. Long and short-term memory gaps, trouble paying attention and staying focused, difficulty figuring things out, and an assortment of other cognitive issues began to plague me. It became enough that I ended up leaving my career and have been disabled since.

While I have a lot of physical and pain-related symptoms, my cognitive problems were the ones that really pushed me out of the workforce. When it happened, I didn’t even realize these issues were possible. In those early days, I thought maybe I’d lose my ability to walk, but my mind would still be there. It turns out I was wrong.

Many people with MS can experience some sort of cognitive impairment. I know that most people become forgetful as they get older, but I was only in my early 30s when my memory issues really started to hit hard.1

Aren’t experiences everything?

Throughout my life, I have been a big believer in experiences. Travel when you can, go to that concert, see that museum, live in the moment, and collect experiences. That’s what life was about to me; it was never focused on having lots of stuff, but rather on doing lots of things and living life to the fullest. That attitude has definitely shifted for me over the years. I’m not happy about that, but I can tell that I put more stock into having and obtaining certain items.

Over the recent years, I’ve become a bit of a collector (I collect toys, I know that seems odd, but trust me, there are many like me who do). Looking at and maintaining my collection is a source of joy for me and is significant, because having those items in hand means that I can’t forget them. Sure, I may forget how I got them, but physically having them means that my fragile memory doesn’t have to be involved as much. Most of my life, I did not have this penchant for collecting things, but now it’s a big part of my personality.

Who am I?

The big concern I have with my cognitive issues is wondering if I am even me anymore. Aren’t our memories part of what makes us who we are? If I can’t remember things I’ve done or even things I’ve read, how doesn’t that impact my personality?

As I’ve said, I know part of that personality has already changed because of all this. I wonder what will happen to me in the future. Honestly, I worry about who I might be in the future and what I might remember. Will most of my life be lost to me? Perhaps it will still be in my brain, but I’ll be unable to access it. It’s a scary thought and it’s why, no matter how much pain or how many falls or how much I slur my speech, I will always say that my cognitive issues are my worst symptoms.

Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!

Devin

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